Category: Research

Slogging Through Again

I am waiting for my ride to go hot air ballooning and working on deciphering an article Lin sent me. Once again the question is how much loss can we expect from dry AMD, especially geographic atrophy? Regillo told me 60 degrees of arc loss would be extreme but my local retinologist said some people in their 90s can have GA encompassing the entire retina. Ouch.  [Lin/Linda: Sue wrote about ‘degrees of arc’ in her page Love Wikipedia.]

So, here be me again, slogging through another article I about half understand. Want to slog along? I would appreciate the company!

The article is entitled Clinical Endpoints for the Study of Geographic Atrophy Secondary to Age-Related Macular Degeneration published October, 2016. You there in the home audience feel free to download it and play along!

First of all, I latched on the statement (paraphrasing) “drusen may not result in actual visual acuity loss but the effects of having drusen can be seen in functional deficits very early in the disease process”. What functional deficits?

A 2008 paper by Feng Qiu and Susan Leat found people with very early AMD have loss of “low spatial frequency static contrast sensitivity”. Yippee. Once more down the rabbit hole. It appears – according to the appendix of Emergent Techniques for Assessment of Visual Performance – spatial contrast sensitivity has to do with lighting, the place on the retina where the image is falling and something called field size as well as time factors and the orientation of the image.

Boiled down it has something to do with how sensitive we are to variations in the data our eyes are gathering. I think. Don’t hold me to it. Just know that 20/20 vision with drusen might not be as perfect as we might think.

We talked about reduced dark adaptation before and this is also a problem in early AMD. Apparently there are several effects early drusen have that have nothing to do with acuity.

The next thing I had to look up – in the same paragraph, mind you! – was information that might help me understand a statement suggesting advancement to GA from early AMD may in part depend upon the presence of “reticular pseudodrusen”. So now we have drusen impersonators????

According to Association of Pseudodrusen and Early Onset Drusen by De Bats, Wolff et al (doesn’t that team sound perfect for the Halloween season?) pseudodrusen form on top of the RPEs and not below them as do ‘real’ drusen. There seems to be a connection between having ‘eye poop’ aka drusen on top of the RPEs and early and rapid develop of advanced AMD.

And the above was all in one paragraph! I may be a very long time in deciphering this baby.

So what I have discovered so far is this: visual acuity does not tell the whole story about functional vision loss when it comes to early AMD. If you have drusen be aware your contrast sensitivity and dark adaptation are probably already compromised. Secondly, pseudodrusen, which is eye poop on top of the RPEs, can predict a more rapid and earlier progression to GA.

Have I found a thing about GA outside of the macula? Not yet, but I am still reading! Talk at ya later!

written October 7th, 2o17 Continue reading “Slogging Through Again”

Not a Total Loss

Hello. Sitting waiting to see the retinologist. I have a day of medical appointments. One is at a satellite office and the other is at the main hospital. Supposedly the hospital will provide connecting transportation. We shall see.

I had to ask to find out if this is a service they offer. If you have to go from building to building such as I am today, ask. They don’t advertise this sort of thing so we need to be proactive.

I realize most of you don’t play Panda Pop but if you do you know you can ‘win’ costumes for Mama Panda. I just won a costume and my Mama Panda now looks like a cross among the bride of Frankenstein, Tim Curry in Rocky Horror Picture Show and Sparkle Brite. Maybe a little Little Richard on the side. Bizarre.

Did any of you see Rocky Horror Picture Show in the theatre? Late 70s. They said “a toast” on the screen and you got pelted with flying slices of bread! Hard to believe that is now nostalgia.

What does this have to do with AMD? Nothing. Just some crazy observations to provide distractions.

If you don’t want to read this sort of nonsense, volunteer to write a page!

Sometime later: the van connection worked. I am now at the main hospital. Remember to ask about such services. No one volunteers the info.

Update on me: my left eye has surpassed my right eye in the race to ‘blindness’. The atrophy in my left eye is ‘advanced’.

Still won’t tell me what to expect, when it will stop. My retinologist said some people in their 90s have deterioration of the entire retina! Gulp! Not what I wanted to hear.

Some lady sat on the bench with me and apropos to very little asked me if “the shots” give me light sensitivity. Since I don’t get “shots” I had no clue. Although I just looked it up and it appears shots do cause some sensitivities. I assume photosensitivity is among them. Comments? [Lin/Linda: actually, photosensitivity is one symptom of macular degeneration. I can’t find anything that says injections can =cause= photosensitivity, but I have heard people say that an injection can make it worse.]

Again, please share. Otherwise I will just prattle on and you don’t want that!

Some more time later: I am now standing in the outpatient surgery waiting room, at the charging station. I have no business in outpatient surgery but the charging station is here! There is none in general internal medicine. Pooh.

These stations have connections for four or five different makes of devices including Apple products. Don’t be afraid to use them if you ‘run dry’ in your device. We have very legitimate uses for our devices and we need to keep them charged…even when the van comes early and you forget your own charger.

And I am adding one piece of legitimate AMD information before I close: According to Pubmed in a brand new October, 2017 release, hot off the presses as it were, dry AMD and prostate cancer are correlated. Prostate cancer can increase oxidative stress in the entire system. Androgen deprivation therapy helps to reduce the chances of AMD.

So, not a total loss of a page. Talk to you later!

written October 3rd, 2017 Continue reading “Not a Total Loss”

Lots of Mayo

One of the best things about the end of Summer here is vine-ripened tomatoes. Our plants did not do well this year but I do take handouts.? I have been being given tomatoes for the last two weeks.

Now, I don’t know about you, but I think vine-ripened tomatoes are truly wonderful on BLTs. With mayo. Lots of mayo. I have been eating BLTs for the last two weeks. With lots of mayo; that is. [Lin/Linda: BLT = bacon, lettuce and tomato sandwich’ mayo = mayonnaise.]

Bacon and mayo mean fat. And what did Lin send me today but an article on fats and AMD. What?!? Do they have a camera in this house? Last time this happened I was going to stand in the sun all day at Briggs Blues Fest. “Sunburn correlates with AMD.”

Now, they are after my BLTs? (With mayo!) Is nothing sacred?

Joan Miller – I actually know a Joan Miller and I bet a lot of you do, too. Just all different ones – is at it again up there in Massachusetts. She is apparently the expert on eyes and fat. Dr. Miller is the person who was experimenting with statins to try to lower risk of AMD. In fact, she co-authored another paper on AMD, fats and statins just this past May. I am printing it off now as we ‘speak’. It is, however, 26 pages of text so don’t expect a quick turnaround time.

What is causing the latest ripple is some very preliminary work Miller is doing on blood testing. The Macular Society ran an article on blood biomarkers for (wet? Not finding that in the Massachusetts Eye and Ear Hospital press release) AMD. Apparently they found 87 fatty proteins, lipids, that were in much higher quantities in the blood of people with AMD. With early warning, different interventions may be used to slow down the progression of the disease.

Which interventions? Dunno, but by the time the Massachusetts study is replicated a few times, we may have something to fight fat in your eyes. Lowering the fat in your eyes means less fatty, ‘eye poop’ (aka drusen) to get between your RPEs and Bruch’s Membrane. That means fewer starving retina cells sending out “Feed me!” signals. Since the “Feed me!” signals are actually the VEG-F, vascular endothelial growth factor, a signaling protein of the body, if we get into the process and interrupt it before the VEG-F (read: “Feed me, Seymour!” signaling) is released, we will not need anything to rid our eyes of the protein. No anti-VEG-F required.  [Lin/Linda: The quotes “Feed me!” and “Feed me, Seymour!” are references from Little Shop of Horrors that she used in a previous page.]

In short: no fat = no drusen = no starving retinas = no ”Feed me!” aka VEG-F signal = no anti-VEG-F shots.

Just to quickly jump across to Europe, I want to mention a lot of the preliminary work for this study was done by a Dutch team headed by Eveline Kersten. Dr. Kersten did a pretty exhaustive literature review of all of the compounds found in fluids from AMD patients. Her literature review gave other researchers an idea of what compounds they should look for in the blood of AMD patients and non-AMD patients to do comparisons. Everyone builds on what others have done. We are in this together.

That is it for now. One other battlefront has been opened. The enemy for this one is fatty eyes. [Lin/Linda: notice that Sue didn’t say anything about giving up her BLTs with “lots of mayo”.  ::grin::]

written September 15th, 2017 Continue reading “Lots of Mayo”

My Friend in Manila?

Happy Tuesday! Waiting for the van to go to school. Yesterday I was picked up at 6:56 to ride 9 miles and be there by 8:30. Dare I say I was not pleased? I just keep turning my mind towards acceptance (DBT alert!).

This is the way it is in my life now and I need to accept such nonsense if I am going to get where I need to go.

Today is day 61 of “your dog is dying.” We took a nearly 40 minute walk yesterday. Pretty active ‘dead’ dog. One day at a time.

I continue to monitor for information on lampalizumab. As of yesterday, September 11, all the news was still financial, but not quite as doom and gloom-ish for Hoffman-La Roche. Just sit tight on that one.

Apellis is drumming up excitement for their geographic atrophy treatment, APL-2. We talked about this before. APL-2 decreased the rate of atrophy growth 29% as compared to sham when injected monthly and 20% when injected every other month. In the second 6 months of the trial the reduction was 47% in the monthly injection group. APL-2 now appears to be the ‘show’ to watch as they go into phase 3 clinicals.

Philip Rosenfeld wrote a short blurb for healio.com. His disclosure statement said he has investments in Apellis. Either he is talking up the product, is truly sincere, or putting his money where his mouth is. In any case, Rosenfeld remarked APL-2 worked across a genetically diverse population sample. There were no stars and no non-responders.

Unfortunately, Rosenfeld also remarked that there is more of a chance of dry AMD developing into wet AMD when APL-2 is used. His opinion was it would have happened anyway in the eyes that became wet, but that will require more research.

We will keep an eye on APL-2.

10 hours later: The van came at 8:01 and had two people going to the local hospital already on it. Late for work? You could say that. Once more the shortcomings of transportation here are giving me fits.

Next, this has nothing to do with eyes but it happened to me today and I do want to mention it. I got an email from a ‘friend’ asking for a ‘favor’. Since my friend lives in Florida I was thinking it was hurricane related.

Turns out it was a scammer ‘phishing’ for money. My ‘friend’ was stuck in Manila and needed $2000. Yeah, right. I asked a couple of questions, obscure stuff that only members of the group I hung with in my 20s and 30s would know, and that was the end of the communication. Maybe my real friend was not stuck in Manila at all!

It appears many people in the world think of Americans as rich and gullible. I am definitely not the first and I try hard not to be the second. I assume it is the same for you.

If your ‘grandson’ emails or calls for ‘bail money’ from Tijuana, be sure to ask a few, HARD, identifying questions. Something that never got online. If the ‘IRS’ or the phone company or gas company or whatever calls and gives you a phone number to call with your credit card number, have someone look up the number independently and call that number to inquire.

Just another public service announcement.

Will check in again later!

written September 11th, 2017 Continue reading “My Friend in Manila?”

“Feed Me!”

We are having another dreary day. These days always manage to give me that napsy feeling. They also make me want to eat! Ugh.

I do much better when life is fast-paced and I am forced to follow along. If you want something done, ask the busy person.

So maybe if I want to get something done, I should force myself to be busy??? A bit of perverse logic there. Oh well….

I spent a few minutes today looking for new information on lampalizumab. There was nothing except business articles talking about the billions of US dollars Hoffman-LaRoche had been counting on before the phase 3 study failed to show a significant effect for the drug. I guess we need to wait for the research report to actually find out what went wrong. Everything out there now is all doom and gloom and speculation about what will happen to Hoffman-LaRoche stock.

I believe we talked about phase 3 of experiments like this. Phase 3 is a larger “proof of concept” phase. CenterWatch says 70 to 90% of drugs pass phase 3. Apparently most of the work is done in phases 1 and 2. With a statistic like that, now I am REALLY curious to find out what went wrong.

But, never fear, unlike Hoffman-LaRoche, we have not put all of our proverbial eggs in one basket! The article I was referring to in the page Recent Advances in AMD goes on to list quite a few different lines of research. In addition to research into anti-inflammatory therapies they are also experimenting with protective factors for the retina. Then add to those the experimental therapies that inhibit the visual cycle.

No, I am not exactly sure what that is either. My impression is it involves slowing the metabolism of the retina to cut down on drusen aka ‘eye poop’. Less eye poop to get between Bruch’s Membrane and the RPEs, the longer you will have usable vision. Sort of sounds like the low fiber dog food they marketed years ago. Low fiber was supposed to equal fewer ‘landmines’ in the yard. I don’t think that was good for puppies and I am not sure if slowing eye metabolism is good for eyes, but they are the experts so who knows?

Based on the theory neovascularization is caused by under-oxygenated, under-fed retinal cells screaming “Feed me!” like Audrey 2 in Little Shop of Horrors, they are also trying to increase the supplies to the choroid before the retinal ‘natives’ get restless.

MC-1101/MacuCLEAR is a vasodilator that has come through phase 1 testing and is ready for phase 2. That is a topical. They have tried several, other vasodilators with no or mixed results. One of the other ones they have tested is Viagra. However, Viagra did not help eyes at all! Sorry about that. (There goes that excuse for getting the script!?)

Of course, the last course of investigation mentioned is stem cells. I think this may be where I came in. And I know it is where I am going out right now! Chat at ya later!

written September 10th, 2017 Continue reading ““Feed Me!””

Bad Patches

Today, September 8, 2017 started and sort of ended with mini pity parties for me. We had a speaker this morning and I needed to go to the office ‘annex’. For some reason transportation decided they needed to get me to my 8:45 meeting at 7:30. Never going to understand that.

I was accepting of it and took along things to do for an hour. I am getting used to the indignities of the state subsidized transportation system.

After all, I am ‘handicapped’ and ‘elderly’. (You know I find that hysterical; don’t you?)

I was okay with it until my colleagues started to cluck their tongues and make a fuss over the absurdity of it all. Apologies for not thinking to offer well ahead of time and promises to do better. I was chastised for not asking by half the room. Then I had to fight the impulse to cry.

Not sure what upset me. It could have been being reminded it is not fair, whatever that means. It could have been their willingness to help. It could have been being reminded I am now different. Maybe a combination.

Whatever it was, sometimes it just smacks me (you, too?) between the eyes. Believe it or not, I am often able to forget I am now handicapped/disabled/impaired/whatever. Other times….I am sitting by myself an hour and a half early and people feel sorry for me and I feel sorry for myself and that is all she wrote.

The rest of the work day went great. Busy and sort of productive. Of course, I had to get a ‘seeing eye colleague’ to read a particularly blurry fax to me, but that was not a problem. People help.

(Of course this was the same colleague who was making the cracks about allowing the one, ‘blind’ staff member to cut the baby shower cake we had for another colleague! News flash: I could not cut equal pieces when I could see! Bringing to mind a corruption of an old joke: “Doctor, if you fix my vision, will I be able to cut a straight line?….Funny, I couldn’t do it before!” Da dum dum!)

And fixing eyes brings me to the second letdown of the day. I – and I believe others – have been thinking lampalizumab was a slam dunk. It was going to go breezing through the phase 3 trials and help to cure the world. Did not happen. Lampalizumab failed to show a statistically significant effect as compared to sham and the one trial has been terminated.

I looked all over the web trying for specific information and all I found was the press release repeated by about eight, different services. Not sure what happened and I don’t believe they know what happened. Here’s one version of the press release from BusinessWire.com.

Not that I am anyone you should listen to, but I would recommend not giving up yet. They still need to further analyze the data. It is possible they got a split just as they did the last time. Maybe 75% of the samples were non responders but the other 25% responded with a 40% slowing of the degeneration. 0 + 0 + 0 + 40 divided by 4 is 10. An average of 10% would not meet criteria but the 40% would.

Just wait and see. Some days have bad patches, yes, but they often are just that, patches. In the big picture, we are doing okay. Keep on keepin’ on.

written September 8th, 2017

Continue reading “Bad Patches”

Recent Advances in AMD

One more very rainy day. Could be worse. We could be in Texas or Louisiana or Florida or on one of a dozen plus islands in the Caribbean. Definitely could be worse. [Lin/Linda: or Georgia.]

No hip hop class Monday evening because of the holiday. No class last evening because it was thundering and ‘lightning -ing -ing’. Can’t have yoga outside in those conditions.

Consequently, I have already started with a raging case of cabin fever….and I even worked seven hour days yesterday and today! What the hey?!?! Activity junkie here. Jonesing for my activity fix. Pitiful.

Good, bad or indifferent, when I am bored and frustrated I research. Then I write. I am always amazed at all of the research happening on macular degeneration.

Found an article that summarized a fair amount of the work that is going on. This time the Italians made the contribution. Doctors from Milan and Verona wrote Recent advances in the management of dry age-related macular degeneration: a review.

The authors broke down the research into methods of attack. The first area mentioned was nutritional supplements and the AREDS research. Since we have gone over that ad nauseuam, I am going to just mention it and move on. AREDS. ARED2 . Mentioned. Moving on.

Anti-inflammatory agents were next. The first one mentioned was Iluvien. Iluvien is a treatment for diabetic macular edema. It might also be helpful for AMD but the part I want to point out is the delivery system. Iluvien is injected once every three years!

Available in the UK and Germany as of 2014 and FDA approved that same year, Iluvien is delivered in a teeny, tiny little tube that is inserted into the back of the eye through injection with a very thin needle. As I said, the medication is delivered over the next three years. No additional shots.

Now I have not seen any references to this delivery system being considered for Anti-VEGF shots, but personally I would say it holds some intriguing possibilities. Cut the number of shots from 36 in three years to 1? That would have real appeal to me!

I believe I mentioned POT. That is POT4. It is a C4 inhibitor. Zumira and Eculizumab are C5 inhibitors. Once again they are picking a variety of complement factors to target. I believe this is just more evidence we are going to need genetic testing before treatment in the near future.

I also see it as evidence we may require combo drug treatments. If my genotype in regards to complement factors is as bad as I think it is, we may just get one, rogue factor under control before I am bit in the butt by another!

We have talked extensively about lamp stuff. Remember the real pronunciation of the word is more like “Lamp! Uh,Liz,you mab?”. Of course, you don’t need the question mark. I will, however, probably say it with that inflection forever. Thinking about breaking Elizabeth’s light is the only way I seem to be able to remember lampalizumab!

Plenty of other things mentioned but this is getting long. To be continued.

written September 8th, 2o17

Continue reading “Recent Advances in AMD”

So Confused!

I am confused! Not exactly Earth-shattering news, huh? Anyway, I might, maybe, should withdraw what I said about ‘lamp stuff’ being available early 2018. I really am not sure.

My BIG retinologist (Dr. Carl Regillo, Wills Eye Hospital) told me he was thinking of starting me on lampalizumab at my next appointment, which is December, 2017. I heard it. I am going blind, not deaf. We know it would not be straight phase 3 because phase 3 enrollment closed sometime ago. I assumed phase 4 which would have opened it up to just about everyone everywhere. However, articles Lin has found – and I will go over – suggested that is not the case.

I went back to clinical trials.gov for some info. The id number for the study is this: NCT02247479. The study series started September, 2014. That would be phase 1. The date for final data collection for phase 3 is December, 2017 with data analysis and publication by December, 2018.

Now technically, if sites are going to roll immediately into a phase 3b, 3/4 or even a limited 4, I could be in line to have shots in December. Might have a lot to do with who my doctor is. Other people might have to wait. I might have to wait. No clue. [Lin/Linda: we have some clues since she wrote this that are at the end of the page.]

So, there it is. As far as I heard from my doctor, he was thinking about getting me on lampalizumab as early as December 2017. As far as the published articles are saying, we are looking at early 2019. My guess would be to split the difference, early fall, 2018 according to my ‘crystal ball’. Why, because Hoffmann-LaRoche, the parent company, has big bucks tied up in the research and is probably chomping at the bit to make an even bigger profit.

I am a cynic, so shoot me. I sort of think I was born cynical. Either way, my prediction is just that, a prediction. Don’t hold me to it.

All I can say right now is wait and see what happens. “Tune in in December for the next exciting installment of ‘Sue in the Land of the Visually Impaired!’ Will the Wizard try to slow her sight loss? Will he succeed? Will he try to help other citizens of the Land? Stay tuned here in December to find out!”

Sorry I assumed. We all know about assuming… and if you don’t it is ‘to assume will make an ass out of u and me’. Cute, huh? I probably just failed to factor in who my doctor is, access to all of the good stuff and all, because I know I heard him say it. I don’t hallucinate…all that much.

Which leaves me with exactly no space to go over the article Lin sent me. Don’t worry. It is a three-day holiday weekend. I will have lots of time to write other pages. What? Did you hear that? That was the sound of Lin groaning in Georgia…? Bye!

Lin/Linda here: Yes, I am groaning but not for the reason Sue originally thought.  When I searched clinicaltrials.gov for the study that she referred to above, ie. NCT02247479, I came up with 2 studies, one with that number with the information that Sue shared above.  The second one has the study number NCT02745119.  The title of the second one is “Long-Term Safety of Lampalizumab Intravitreal (ITV) Injections in Participants With Geographic Atrophy (GA) Secondary to Age-Related Macular Degeneration (OMASPECT)” and it says it is phase 3 & is now recruiting and ending in October 2019. Maybe this is how she will be getting the ‘lamp stuff’??

written September 2nd, 2017 Continue reading “So Confused!”

Research: Dry & Wet AMD

Hello! I am going to get to the article Lin found on BrightFocus Foundation’s website about ‘lamp stuff’ aka lampalizumab but first I wanted to quickly mention a Google Talk by Isaac Lidsky. The title is Eyes Wide Open.

Lidsky began losing his sight to retinitis pigmentosa when he was 13 years of age. Although he has been totally blind for many years, Isaac Lidsky is extremely accomplished and has developed a philosophy that includes all sorts of concepts such as being present in the moment, doing what works and not abdicating responsibility for your life to your personal heroes and villains. His half an hour Google Talk may make some people rethink their attitudes towards their sight losses.

While I don’t expect many people to feel ‘lucky’ they are going blind – and Lidsky does consider his blindness to have been a blessing – Lidsky’s perspective on things can be thought provoking.

OK, onward to ‘lamp stuff’. We have quoted Joshua Dunaief before. One of the most helpful things he does for me in the current article is give us a pronunciation guide for lampalizumab. It is lamp-uh-liz-you-mab. Sort of like “Lamp!…uh, Liz, you mad/b?” You know, what you say when you knock over Elizabeth’s favorite light.

We have gone over the study results already in these pages. Complement factor I variant folks got kickin’ results. The rest of us, not so much. A reason for genetic testing for us before we submit to needles in the eyes, literally!

Dunaief says results are expected in 2018. Yep, December is their target date for publication. He does not mention phase 3 is over this December as is indicated in clinicaltrials.gov.

So, basically, still not really sure what is happening with ‘lamp stuff’ and me. May be offered it in December. May not be. May accept the offer. May not. I would love to know my genotype as compared to the SNPs they found in the experimental sample. Being a responder would be incredible. Being a nonresponder would be very bad. Dilemma.

And information for our ‘wet’ friends for my last 200 words. In JAMA Ophthalmology Jackson, Boyer and Brown reported the results of an experiment with an ORALLY administered vascular endothelial growth factor (VEGF) inhibitor. In other words, they have been experimenting with a pill they hope would do the same thing as your anti-VEGF shots.

The stuff is a tyrosine kinase inhibitor. It caused a lot of upset tummies and diarrhea (5 and 6 subjects out of 35 respectively) but the side effects were not bad enough to stop the experiment. Some people did stop because of liver problems. Those with liver issues would probably not be candidates for the treatment.

Only 40% of the total required rescue shots. Even those people received fewer injections than they had without the pills.

Before you all rush out for your X-82 pills, bear in mind this was a phase 1 experiment. That is safety and tolerability, guys. They are moving on to proof of concept, phase 2, with a bigger n. (n being the number of subjects in the study, remember). Check clinicaltrials.gov if you are interested.

Remember we all do our part in this fight. If you have a strong liver and a strong stomach, X-82 might be your kind of research. You might get to be a lab rat before I do!

written September 2nd, 2017

Continue reading “Research: Dry & Wet AMD”

The Winner Is…Genetics!

I just tried to read the article listing the different genetic variants that have been associated with AMD. The complementary system in Age-Related Macular Degeneration: A review of rare genetic variants and implications for personalized treatment is declared the winner!

I admit defeat! Maybe I can study genetics for a decade and come back for a rematch.

I can sum up what I learned in about two sentences. The great majority of SNPs associated with AMD appear to be on chromosome 1 where the complement immune system is coded. SNPs cluster around the location of Complement Factor H although there are also large numbers of mistakes in the neighborhoods of Complement Factors i,2,3,9 and B.

The second thing I learned is this: the rare forms of AMD are coded for in other places. These ‘outliers’ are being studied in genetically-isolated groups such as the Amish.

Side note: The Amish are a closed, religious and cultural sect. Pennsylvania is a population center for the Amish. Therefore, here in Pennsylvania they live in association with us although not necessarily among us.

The Amish have all descended from an initial group of about 200 families. Because of the close inbreeding they suffer from a variety of genetically based problems such as dwarfism, Angelman’s Syndrome and several metabolic disorders. Being such a ‘natural laboratory’ for study of the founder effect, the Amish have allowed much genetic testing on members of their community. One of the conditions studied? Age-Related Macular Degeneration.

For more information on the Amish, check Wikipedia or your favorite reference.

OK, so it is not strictly info on AMD, but man does not live by vision loss news alone. I find that sort of stuff interesting. Hope you do, too.

And quickly back to the AMD stuff – because I only have about 200 words left – the Audacious Goals Initiative is still working hard to stamp out blindness. I found a better article on the mouse-zebrafish experiments on their page at the National Eye Institute. This article stressed how the Muller glia cells from the zebrafish had been able to be transformed so beautifully they were electrophysiological indistinguishable from interneurons cells. They had integrated well on both ends of the connection required and were sending signals to the brain. In other words, the zebrafish cells had changed and connected so the blind mice could now see.

Very preliminary work but exciting. The article cites a lot of problems such as: there are not quite enough zebrafish eyes to satisfy the demands of potential research. It might be best to find ways of coaxing regeneration of existing cells in our own eyes. Save the zebrafish!; you understand.

Just one more amazing bit of research and discovery that some day will eliminate Age-Related Macular Degeneration and allow people to see….I’m just glad there are people out there who are a helluva lot smarter than I am to do the research. Now, anyone want to explain the genetics to me?

written August 27th, 2017

Continue reading “The Winner Is…Genetics!”

Another Potential Treatment

The more I look into this, the more overwhelming it seems! I am glad I never tried to be a geneticist!

What am I talking about? The latest information on treatment for geographic atrophy suggests there is another gene being targeted. The gene is C3.

Remember how I have been saying Age-Related Macular Degeneration is looking not like one disease but like a family of diseases? When I followed up with some background research on complement factor C3, I found a list of – get this – over 3 dozen different SNPs that preliminary evidence suggests have a role in causing AMD. Remember SNPs or ‘snips’ are genetic coding errors. Some are beneficial. Some are neutral and some can really screw thing up.

Anyway, it appears there are literally dozens – if not more – of ways we can be ‘wrong’ to get AMD. Right now that means they are working on finding dozens of ways to intervene. May be a panacea sometime in the future, but right now they are nibbling at the problem a piece at a time.

And the piece they are nibbling on now is C3. According to a short article by FierceBiotech, Apellis has finished phase 2 – the proof of concept phase – trials with intravitreal injections of a drug they are calling APL-2. Later it will get a trendy brand name but for now look for APL-2.

BusinessWire identifies Apellis as a company “developing a platform of novel therapeutic compounds for the treatment of autoimmune diseases” so I guess people are coming around to see AMD as an autoimmune disease. APL-2 is described as a complement factor C inhibitor. It “binds specifically to C3 and C3b, effectively blocking all three pathways of complement activation (classic, lectin and alternative).” That sort of sounds like it is suppressing ‘friendly fire’ sooner in the process and may be closer to the ‘one treatment fits all’ that we would like to see. Not anywhere near there, but closer.

The results were very promising. At 12 months they showed a 29% reduction in growth as compared to sham.

But the weird – and great! – thing that happened was this: during the second six months of the study, the reduction rate was 47%! For some reason, the effects of the treatment appeared to be cumulative. Pretty cool.

Now I am not sure what type of genotype you have to have to profit from treatment with APL-2. The researchers are not sure at this point either. They decided to do some searching for genetic markers. Being the suspicious sort, I am wondering if they had star responders and non-responders just like they did with lampalizumab. Would make sense. Why do genetic testing on an ‘n’ of 246 people if you don’t have to? It’s expensive.

And speaking about money, there is a lot of money to be made with this drug. Apellis wants to get APL-2 to market quickly so it can compete with eculizumab, a treatment for PNH, a blood disease. (Apparently PNH is also related to complement factor C). Their competition, Soliris, was predicted to bring in more than $3 billion in 2017. Sometimes a little greed is a good thing! $3 billion can really motivated people.

So, there you go. It seems they have found one more way to save some of the sight of some of the people some of the time. Number two potential treatment for our ‘untreatable’ disease. The wall is coming down a brick at a time. There is hope.

Here’s another article about APL-2 that says “APL-2, a complement C3 inhibitor, has met its primary endpoint in its phase 2 clinical trial, reducing the rate of geographic atrophy (GA) associated with age-related macular degeneration (AMD).”

written August 27th, 2017 Continue reading “Another Potential Treatment”

MacTel

Finished the hands and knees – or actually hands and butt; my shorts have a wet seat to prove it! – scrubbing of my kitchen floor. One chore down!

Of course while I was down there I realized the next thing I should do is wipe down all the lower cupboard and closet doors. Things look a lot cleaner when you can’t see them.

I kept thinking “For this, I did 6 ½ years of college?”. Still had to be done. I am thinking that now, instead of doing a task when it looks like it needs it, maybe I should get a schedule. Won’t happen, but already lax housekeeping and low vision may prove to be a very nasty combination.

So now back to something a little more, shall we say, intellectual. Checked online and found some newer information being published by the Macular Degeneration Association. The one article says that AMD and telangiectasia might be caused by faulty energy metabolism in the mitochondria.

This phrase appears to be becoming popular on the lecture circuit: let us unpack that; shall we? ? Gee, did I sound professorial?

According to Kierstan Boyd, writing for the American Academy of Ophthalmology, macular telangiectasia, MacTel to it’s friends, is a macular disease causing central vision loss. In type 2, blood vessels under the macula swell and/or leak. Fluid causes the macula to swell and thicken (edema). Scar tissue forms. Type 1 is type 2 in one eye only.

Sounds similar to AMD without the RPE deaths and that divot that lets people see our choroids.

Mitochondria? Wikipedia gives us a lot of info we don’t need. The info we want is mitochondria combine oxygen and nutrients and produce ATP. ATP is a source of chemical energy for your cells. In short, your cells work and you live because of mitochondria.

Discovered from the article that retinas have more mitochondria and use more energy than any other cell in the body.

I had known eyes are energy hogs, but I did not realize they were the worst, gas-guzzlers of the body!

The findings of the study suggest there may be something wrong with the lipid (fat) sensors associated with this energy production. The sensors think they have lots of lipids stockpiled for energy production. They send out a message saying not to deliver any glucose (sugar) to burn. “Stockpiles are full. Stop all deliveries!”. The problem is, the sensors are wrong and more supplies really are needed. Energy-starved, the photoreceptor start screaming to be fed. This leads to new, inferior vessel formation and leaks leaving us with either wet AMD or MacTel.

So here we are with one more, ‘new’ eye disorder and another theory on what is going on in our poor, misbehaving eyeballs. Never heard of MacTel before, but if you have MacTel and you are reading this, welcome! It sounds as if the end results put us all in the same boat. Once again, we are on this journey together. Continue reading “MacTel”

Cataracts and AMD

Hunting around for a good topic and AMD and cataracts popped up in the search. Daddy had both and I would suspect some of you have both, too. Is there a relationship between AMD and cataracts? If so, what is it?

Turns out those are excellent questions. The experts are falling on different sides of the fence as to whether or not there may be a relationship between them.

Back in the earlier years of this century (2002) the good folks in Wisconsin, the Beaver Dam Eye Study people, again looked at their subjects after ten years had passed. Statistically, there was an indication that cataracts alone are associated with early AMD. There was also a statistical correlation between cataract surgery and late AMD.

Once again, we are looking at correlation. Correlation does not assume causality. Want a giggle over crazy correlations? Go to the website Spurious Correlations for some fun graphs. You will quickly see how just because things correlate they may not cause one another.

Anyway, like I said, they are still casting around to try to get some definitive answers on this question. The Chesapeake Watermen Study found a correlation between having cataracts and AMD but the Framingham Eye Study and some early Blue Mountain work did not.

But what about a correlation between cataract surgery and late AMD? Beaver Dam found cataract surgery before baseline (initially study measures) was associated with increased risk of late AMD. In fact, eyes that had cataract surgery were four times as likely to develop geographic atrophy and three times as likely to develop wet AMD! Holy freakin’ moley! How do you like that for being between a rock and a hard place?

Of course, like, I said, there is no certainty in any of this yet. In AREDS Report 25, Chew et al reported no correlation between cataract surgery and ARM. Hard to know who to believe.

So, what to do? No one is saying to go blind with cataract now rather than wait and go blind with AMD later. Do what you have to do to see.

FYI Blue Mountain, fortunately or unfortunately, flipped over to the significant correlation camp in reviewing results of a 2006 study. While that may not be great news for those with cataracts, Blue Mountain also shared yet another point they agree on with Beaver Dam. They discovered nonphakic eyes had a three times greater risk of developing late stage AMD as opposed to phakic eyes.

I know. I know. Don’t get your panties in a bunch.  Here is the explanation: in phakic cataract surgery, there is a small incision made in the front of the eye and the artificial lens is implanted. The natural lens is not removed. In nonphakic cataract surgery, the lens is removed.

Talk to your doctor, but as it stands now, given the choice, the phakic procedure sounds like a better choice to me. Might decrease your chances of advanced AMD.

Written August 7th, 2017

Continue reading “Cataracts and AMD”

The Proper Magic Potion

Hi, home from physical therapy. My physical therapist and I looked all through the offerings of a world-famous corporation – gee, what could that be? – and picked out a new cart for me. See how this one works.

I came home from Penn State with my rotator cuff tendinitis flaring again. I had hauled my rolling crate around with some of the travel being uphill. Apparently not a plan. Not only do we become pack mules for all of the vision related stuff we get to haul around, we also get to have pack mule injuries!

How do other people handle the problems of – well, freight? Does anyone walk to the grocery? How do you haul everything? Any great ideas on carts?

I looked online for ergonomic carts and dollies and what they are showing is similar to what I just ordered. I will let you know if the new one is any better than the several I have purchased over the last year and a half.

FYI if you know someone who is mechanical and want to make some money, ask him (or her!) to design a rolling crate that can take punishment and not fall apart in three months! Not only would I buy one but I know several teachers and therapists who would also buy one.

That is the practical part of this page. Now for the not so practical but sort of cool part. Anybody ever read H.G. Wells The Island of Dr. Moreau? In that late 1800s science fiction novel Dr. Moreau creates human-animal hybrids using vivisection. Nasty business.

Today scientists are much more efficient than what Wells imagined. Today if scientists want a fish-mouse hybrid, they do it at a genetic level.

Madness, you say! (Cue demonic, mad-scientist laughter). Whoever would want them to produce a fish-mouse hybrid? Well, maybe you would.

Zebrafish are cool. They can regenerate parts. Put zebrafish genes in mice and they can regrow parts, too.

The parts the scientists are growing in mice are glial cells. The scientists have prompted the glial cells to become functional interneurons in mouse retinas.

Interneurons are connecting cells between other nerve cells. Remember I told you they are able to grow photoreceptors in eyes but cannot get them to connect? Interneurons are connectors. They receive and process signals from the rods and cones. With the proper magic potion for the job, scientists got adult mice to grow interneurons in damaged eyes. And the best part of all? They conducted signals!

This research was just published in July, 2017. It’s very early days and they have to work out many bugs, check for safety, etc. but it is the first step. Maybe some day they will inject photoreceptors into your eyes, inject zebrafish genes and magic potion, all over your lunch hour. By the end of the week you will have grown those new photoreceptors AND hooked them up to your optic nerve. Wow. Science fiction becomes science fact.

If you want to read the short version of the research findings, I found them in the ScienceDaily post. The date was July 26, 2017.

written August 1st, 2017

Continue reading “The Proper Magic Potion”

Studying the Study

Lin found the paper discussing results from the phase 2 study of lampalizumab. It is a little dense but I will try to pre-digest it a bit for you. [Lin/Linda: we’ve been calling it ‘lamp stuff’.]

The study design itself was somewhat basic. There were two independent variables and two controls or shams. Independent variables are the things the researchers are manipulating. In this case it was two dosage schedules. Shots of the drug were given every month and every other month.

Controls, or sham treatment groups, were given shots on the same schedules. However, their shots did not contain lampalizumab. They just thought they did.

Overall, when the every month dosage of lampalizumab people were compared to the every month fake treatment people (sham condition), their rate of degeneration was slowed by a fifth. That is where the 20% number comes from.

However, when the researchers looked at their raw scores, they made a discovery. Some of the subjects absolutely rocked it! They were showing decreases of 44% in rate of deterioration. Others did not differ at all from the controls. Their eyes just continued to get worse at the usual rate. What the hey?

Thinking the difference might be genetic, the researchers thought about which genes to consider. They ended up with the complement factor I at-risk allele as a possible suspect.

An allele is half a gene pair. Genes come in pairs; remember? One from Mom and one from Dad. Alleles can be matched or mismatched. Terms are homozygotes and heterozygotes, but that’s not important in this case. It wasn’t important to the researchers either. They decided to look at people with one and two ‘bad’ alleles of complement factor I.

When they put everyone with good CFI alleles in one pile and everyone with at least one bad one in another pile, they made another discovery. It was the people with the bad CFI alleles who had responded to the lampalizumab. There appeared to be something about that gene that interacted with the lampalizumab in a way that slowed things down.

Looking back at their numbers, the researchers decided all of the ‘work’ done in the initial, whole group was done by the bad CFI allele people. There was an overall difference of 20%; right? But remember we are talking arithmetic averages here. If half of your group ‘improves’ by 40% but the rest of the group improves by 0% when you add them together and divide by 2, you get 20%. 20% is sort of misleading. No research subject showed a 20% rate decrease. They were either at somewhere around 44% or somewhere around 0%.

There are some things that need to be further studied. The number of subjects was not large and they need to replicate things with lots more people, for example. However, for right now the takeaway message for us is this: as suspected, AMD is looking like not one disease but a family of diseases. It is created by several different genetic flaws. The lampalizumab phase 2 study results suggest this drug will only be good for the AMD ‘family member’ that is caused by complement factor I at-risk allele. Those of us – like me – who do not have bad CFI alleles will have to wait for another breakthrough.

Those of you with CFI at-risk allele can rejoice! It looks as if they have found the first real TREATMENT and it is for you! Congratulations! We are all happy for you and want to follow you very soon.

If you really want to look at the scientific paper from the study, click here.

written July 24th, 2017

Continue reading “Studying the Study”

Overcoming Uncertainty

Medical treatment is a very uncertain proposition. Writing for the Journal of Graduate Medical Education Wray and Loo quoted Sir William Osler as saying “Medicine is a science of uncertainty and an art of probabilities”. The authors report that rarely is evidence of benefit totally clear-cut when a treatment has been administered. Also, it is rare for practitioners to agree totally on a treatment.

Sometimes opinions are expressed in such a robust manner by both that the patient is left in a quandary. How are we supposed to know who is correct? What are we supposed to do now?!?!

Wray and Loo suggest doctors (and others) look at the evidence. Is there evidence suggesting one treatment is superior to another? What does the research say?

Lin and I are big on research. The truth will be seen in the research. Notice I used the word will, future tense.

Work being done on AMD causes, treatments and maybe even cures is in its infancy. Like all infants, things are subject to change. The infant with blonde hair and a little button nose who you think looks just like your father may grow up to have brown hair and a ‘beak’ just like his uncle on the other side of the family! Final results subject to change without notice. Wait and see.

So many doctors don’t like to say they don’t know. Wray and Loo say it is a mark of professionalism to be able to discuss the pros and cons AND the uncertainties of a treatment, but how often does that happen? Maybe there is not enough time. Maybe they are uncomfortable being fallible. Maybe they think we can’t take it.

Wray and Loo talk about the emotional burden of uncertainty. Uncertainty is nerve-wracking. Many of us feel better believing any plausible nonsense than being told there is, as of yet, no answer.

The problem with believing strongly in something uncertain just so we HAVE an answer? When you find out your life-preserver is actually a cement block, you are too invested in it to let go!

How to handle uncertainty. I actually had to smile because when I went online what I found was totally in line with DBT. If you want to go back to the DBT pages, have at it.

Travis Bradberry, a positive psychology proponent, shares 11 Ways Emotionally Intelligent People Overcome Uncertainty. Bradberry tells us our brains are hardwired to react to uncertainty with fear. He quotes a study in which people without information made increasingly erratic and irrational decisions.The diagram Bradberry showed was a brain and his caption said “uncertainty makes your brain yield control to the limbic system. You must engage your rational brain to stay on track”. Sounds three states of mind-ish to me.

Beyond that, Bradberry suggests calming your limbic system by focusing on the rational and real, being mindful of positives, taking stock of what you really know and don’t know, embracing what you cannot control (also known as accepting reality), focusing on reality, not trying to be perfect, not dwelling on problems, knowing when to listen to your gut, having a contingency plan (what I have always called plan B), not asking what if questions and – guess what! – breathing and being in the moment.

Hope this helped some. Remember this journey is not a sprint, it is a marathon. In fact it is a marathon that we don’t even know the course. Keep an open mind and don’t latch onto anything out of fear. Eventually we will find the way.
Continue reading “Overcoming Uncertainty”

That Preachy Zealot

Here she is again, that preachy zealot for clean living! How are you all doing?

I was looking for new info on AMD and I found this article.

I know I harp on this topic ad nauseam but seeing this in the new releases I could not help myself. I am basically weak (and can be profoundly irritating?).

Anyway, a recent article on nature.com presented research suggesting AMD does not like clean-living folks. People working on the Blue Mountain Eye Study evaluated a group in the late 1990s and then again 15 years later. They looked at physical activity, diet, smoking and alcohol consumption as it relates to AMD. After all was said and done, the researchers decided it would be helpful if people could be encouraged to engage in good health habits.

They quoted data that women who eat well, are physically active and don’t smoke are three times less likely to develop AMD than women who do not have a healthy lifestyle. If you add the complement factor H at risk allele into the mix, the poor souls who eat crap, don’t exercise and smoke really don’t have much of a chance of dodging the disease at all.

What I just quoted was an older study, CAREDS. It used only women. The Blue Mountain people decided to replicate it but to include both genders. They also added alcohol consumption as a variable.

Blue Mountain concluded the combined effects of the four, healthy living variables were better than only one of the habits alone. They hypothesized each of the healthy habits helps to reduce oxidative stress and therefore reduce inflammation, generally thought to be a huge factor in the development of AMD.  [Lin/Linda: Sue talks explains what oxidative stress in her page Electron Rustlers.]

In addition, good health habits can affect the density of macular pigment. Thicker macular pigment can be protective. And BTW, levels of macular pigment can be negatively affected by obesity.

Since I always like to support our friends Down Under, I am making a pitch for healthy living just like the Blue Mountain people. Avoiding bad habits and developing good ones can decrease your chances of developing AMD. It can also reduce the rate of progression of the disease.

Hard to change habits? Absolutely. I am a carbs and salt girl. Horrible for me, but that is what I crave. I have never been a fruit eater.

However, since getting my diagnosis I am drinking a cup of fruit juice every morning. Enough of a change? I doubt it but at least I feel as if I am making the effort.

How long does it take to establish a habit? Google says 66 days. If you can change one thing in your lifestyle and stick with it for 66 days, you have dealt a blow against AMD. Lifestyle changes are one way we can take some of our power back from this disease. Worth a try. Continue reading “That Preachy Zealot”

Whoopsie!

Whoopsie. Errata alert. I discovered the NaturalReader does NOT support Kindle like I thought [see previous page Jabbering]. This is because Kindle books are DRM (Digital Rights Management) books. Also iBooks, Nook and Adobe Overdrive. DRM is related to copyright laws. There are ways to get around the software ‘locks’ and you can easily find these offered on the web. However, they are illegal and we try not to encourage criminal behavior. Rumor has it scofflaws use something called Calibre. And that is what I know about that subject. ? [Lin/Linda here: I had to look up ‘scofflaws’ in the last sentence.  It is “a person who flouts the law, especially by failing to comply with a law that is difficult to enforce effectively.”]

I looked at Gutenberg.org and found titles like “The Paper Currency of England Dispassionately Considered”. Whoa.

Numismatists study coins AND paper money (thought it was just coins). Hopefully they would be enticed by that title. Me? Not so much.

So far on a cyber search of non-DRM ebook sources I find nuthin’. So for right now for ebooks on NaturalReader I guess it is Gutenberg.org or nothing. Remember if you are legally blind like moi, you can get BARD. I am just finishing listening to John Sandford’s Golden Prey. Love Lucas Davenport. Also, ebooks will zoom on a tablet so those with less of a vision loss can go that route. Sorry I fed you bum info.

And in other news, I passed the 100 mile mark on my bike today! This summer I have been using it for transportation. I realize for many of you your cycling days may be behind you; however, for those of you who can still ride and live in an area conducive to bike travel, it can be an option. Traveling at 7 miles an hour it is easier not to run into things than when you are traveling at 70 mph.

Of course, I almost had my first accident today. I was riding in the street parallel to some guy on a Jazzy (electric wheelchair) on the sidewalk. He decided he wanted to go across the street, swerved right and nearly took me out!

Maybe I should get a bell for my bike…or one of those horns with the red bulb. Anyway, glad I was able to avoid him. How do you explain being taken out by a Jazzy? It would be humiliating.

And because I am again prattling about things totally unrelated and of no great importance – and because I need about 150 more words! – I wanted to ask if you folks knew we are creating great investment opportunities? OK, maybe not us personally but I found a BusinessWire report on Global Age-Related Macular Degeneration Partnering Deals. They are hyping advice about buying into research and development of AMD treatments! They think people can make buckets of money off of us!

Now, some people may think it is rather opportunistic of these potential investors, but I think it’s great. The only way they can make said buckets of money is to invest in treatment we will buy. That generally means something that will work. If research is stirring up enough interest for people to be buying AMD specific investment advice, things have to be happening!

And that is the end of this page? Continue reading “Whoopsie!”

This and That

Hey, guys! No idea what I am going to write about. I will just start and see what comes out. I have an hour to kill before going to teach class.

Told you I renewed my driver’s license yesterday. That was sort of stressful. I tried to do everything ‘right’ so I did not end up ‘outing’ myself. I would not want to try to pass as fully sighted everyday. I guess the truth really does set you free!

Remember: I don’t drive. My stubbornness and vanity are not worth someone’s life. I just needed to feel like a ‘big girl’.

After that I went and made a physical therapy appointment. I need to bring this shoulder back to health. Right now it is cramping my style worse than the eyes. The eyes don’t hurt! The shoulder does. I thought I was being good, but it still aches. Try trying to be active but not using one arm. Grrrrrrrrrr……

After kayaking on Sunday (yes, I know I have a bum shoulder. It reminds me hourly), I went to the phone store and got a new cell phone. Two and a half hours later and I was out of there. In that time I had to go potty at least once. If the process went on for another half an hour I was going to ask them to order take out!

Anyway, the point is this: phone store people are very helpful. They will spend the time with you. I still have a lot of stuff to do on the phone but Ron, the phone store guy, gave me his number and he promised to walk me through it all. As soon as I figure out some of what the hey I am doing on this phone, I want to load the augmented reality app and see how it works as a magnifier.

If your phone is slightly older, like mine was, it might behoove you to invest in a new one. On the new one, Ron turned the magnification up all the way. If I do the three taps thing after that, letters can be ¾ of an inch high. The easier to see, my dears.

Three taps thing? Yep. It is possible on Android phones to tap the screen three times in quick succession and everything magnifies. Three times again and it goes back down. No one may have showed you that little trick. The younger generation believe tech knowledge is innate, not learned. They think we should know.

And now news some of you can actually use, they are finding more evidence that we may be better off doing genetic testing before we start drug therapy. PubMed recently ran an article citing research that the risk allele of the Y402H polymorphism in the CFH gene is related to less favorable outcomes when using bevacizumab (Avastin) or ranibizumab (Lucentis). (Quiz: What does -zumab as a suffix tell us? Answer: humanized antibody. I learned something!) The ‘in English’ version of that is this: if you have a certain variation on the complement factor H gene, your response to those drugs will be less than you expected when it comes to wet AMD control. If you are not getting desired outcomes with either bevacizumab or ranibizumab, you might suggest your doctor try another drug instead. It appears that, in some cases, if one of those drugs doesn’t work well, the other one won’t work well either.

Well, I guess I should stop prattling here. Need to get ready to go again. Type at you later!

written July 12th, 2017

Continue reading “This and That”

Someone I Am Not

Passing. Those of you who are into sociology or history know what that is. Wikipedia defines it as the ability of a person to be considered part of an identity group other than their own. Racially mixed slaves could sometimes pass as white when they came north. Over the years many gays have passed as straights. The term used there is generally ‘in the closet’.

I can still pass as a fully sighted person quite well. Yesterday I was at the doctor for my shoulder. Dr. Sue was right, rotator cuff tendinitis.

When I told the real doctor there were some things I could not see because of my vision loss, the doctor told me she never would have known. I passed well.

Today I went to have my driver’s license photo taken. I had everything ready. I sat there and listened to every question the people before me were seeing on the screen. I had my answers down cold! Yes, I am an American citizen! Yes, that is my date of birth. I looked at the yellow blob the photographer said was a smiley face and smiled for the camera. I passed as a person with acceptable vision.

Now, don’t get me wrong, I am NOT driving. Probably could. Slowly on familiar roads I could (no matter what my husband says!) I play this game in which I watch for on-coming traffic when I am in the van. 98% of the time I am right as to how many cars are approaching. It is that 2% that keeps me from getting behind the wheel.

When I told a teacher from school (you run into people you know at the darndest places!) what I had just done, he said it made sense to him to renew my license. Better safe than sorry. He thought in an emergency I could still drive. Yep, but that was not my main reason for renewing my license.

I renewed my license so I would not feel like a second class citizen. One of the same reasons blacks tried to be accepted as white and gays have tried to pass for straight. I did not want to be relegated to the back of the bus! Metaphorically speaking, of course.

Learned and thought about a couple of things. First thing: trying to pass is stressful! I was half expecting to be ‘discovered’.

The second thing was a something I realized. Light bulb moment. There is black pride and gay pride but no low vision pride! Why did I even feel the need to pass? I obviously don’t think the visually impaired me is ‘good enough’. I need to add symbols of what I consider to be a complete adult. Hmmmm.

THAT is something for a visually impaired support group to mull over. Thought I would throw it out in a moment of stark honesty and see what you think. I would suspect other people have felt ‘less than’ as well.

The other reasons I renewed my license are me being both practical and ever hopeful. Driverless cars are coming. It would be awesome if they were available to the general public in the next four years before this license expires. What if you have to be a licensed driver to drive one? I should have a valid license! And what if a miracle happens and they find a way to either biologically or technologically restore my sight? I need to be prepared!

So, just shoot me. I spent part of my morning pretending I was someone I am not. I passed. Pretty stressful actually. Between the shoulder pain and that, I need an early nap time. Tomorrow, I am back to being visually impaired.

written July 11th, 2017

Continue reading “Someone I Am Not”

Rock On!

Over the past year I have developed a certain affection for Cheeseheads. Wisconsin seems to do a lot for people with visual impairment. However, I am starting to think the Beaver Dam researchers may be a bunch of killjoys!

Wisconsin? Beaver Dam? Yep. Beaver Dam is a town with between 16,000 and 17,000 people located along the Beaver Dam River and, yep, Beaver Dam Lake. I guess they ran out of catchy names. (Actually, that really DID happen in upstate New York. I got a giggle out of the fact they gave up and just started numbering lakes!)

But back to Wisconsin. The Beaver Dam study started in 1987. Since then they have regularly polled and tested the folks about all things vision. A big area of interest for them has been macular degeneration.

Lin sent me a 2004 article on how the Beaver Dam people found a correlation between sunburns in youth and macular degeneration. Problem was she sent it Friday evening. The evening before I was going to “Brigg’s”, an outdoor blues/music festival. Really???? Why now? [Lin/Linda: in all fairness, I did not know about Brigg’s until AFTER I sent Sue the article!]

To make a long story sort of short, I put on my ‘dancing shoes’, slathered on the sunscreen and went. The article said sunburn in your youth. Sixties are not youth; right? Had a great time.

I decided old rockers never die; they just go to music fests. I saw more gray ponytails – male and female – than I had ever seen in one place before in my life. Rock on!

Came home and I am looking into this sunburn and AMD stuff. After all, outside is one of my favorite places!

The article Lin sent me says people with 5 or more hours of sun exposure are more likely to have increased retinal pigment. Hats and sunglasses are associated with fewer soft drusen and RPE degeneration. 10 or more ‘severe’ sunburns in youth is more than twice as likely to be correlated with AMD later in life than two or fewer sunburns.

Something that was a relief to me was there was no correlation between time spent outdoors in winter sports and AMD. Apparently my day skiing right before I ‘lost’ my second eye had nothing to do with things. (Phew!)

The report kicks around several reasons for the sunburn/AMD correlation and finally decides more study is needed. Me, too. Khan, Shahid and Yates found a ‘suggestion’ of an association between sunburn prone skin and geographic atrophy. In 1998 the Blue Mountain Eye Study (hi, there, New South Wales!) found blue eyes can lead to AMD trouble. Sounds like the jury may still be out on sunburnt SKIN and AMD.

However, the jury has come in on sunburned eyes. The Southwest Eye Center reports photokeratitis, sunburn of the eye, can result in pterygium (a condition of the conjunctiva/cornea), cataracts and possibly cancer. AMD is listed on the page as a ‘maybe’.

Bottom line is this: wear sunglasses. Wear sunscreen. And, rock on! ?

written July 9th, 2017

Continue reading “Rock On!”

Piles of Articles

Long, holiday weekend. I am on the second day of four and have gotten pretty much nothing done. Oh, well. Procrastination is us.

Be that as it may, Happy Fourth of July whenever you may be!

Part of the ‘straightening up’ task for me is going through piles of articles I have found interesting and printed out. That word is actually PILES.

Just rediscovered one – Update on Genetics and Age-Related Macular Degeneration by Jerome Dunaierf – that has some good stuff in it. Did you know people with a parent with AMD have DOUBLE the risk of getting the disease? Make sure the kids get their eye exams!

Jerome talks about the complement immune system and does a nice job – much clearer and nowhere near as fanciful – in describing how the ‘friendly fire’ bit works. He shared the proteins that activate the complement system have been found around drusen. (Maybe a demented garbage men analogy would be better? Coming for the trash but hauling away the house?)

Jerome also talks about the ARMS2/HTRA genes. Enticing and mysterious those. No true clue what they do but we with AMD often have certain variants of them.

Other genes that seem to be somehow in the mix include genes that code for collagen formation, cholesterol formation and cell signaling. You might not realize it but the chemical ‘chatter’ going on in our bodies is deafening! Eavesdrop on that and we could intervene in amazing ways.

Jerome agrees with me lampalizumab will open up a HUGE market for genetic testing. (Probably the reason I kinda like Jerome). He shared it is now possible to sequence an entire human genome in a few days. The cost? About $1,000.

Wow. Have your code read and know exactly which drug is going to work on you. How far in the future before genetic sequencing becomes a requirement for getting health insurance? Ethical nightmare that.

And a little filler here: Pubmed published an abstract on a meta analysis of 10 trials about the risks and benefits of aspirin. Bottom line was this: aspirin can keep those of us with cardiovascular problems alive. Proven. Aspirin might, maybe, could have a negative effect on your AMD. The authors, Small, Garabetian, and Shava decided most of us would want to be alive. Their advice was to take your aspirin.

OK. A few more things off the pile. Time to wander off to something else. Maybe some housework. Gasp!

I am staying home from yoga today. Self diagnosis of rotator cuff tendinitis. Doctor’s appointment next week by which time I will not only have diagnosed but also treated myself!

My yogini is digging out a ‘no arms’ practice she found so I can try that tomorrow. Movement continues to be important to – and for! – me. Where there is a will, there often is a way.

That is what is happening here. Hope you are all doing well. Bye!

written July 2nd, 2017

Continue reading “Piles of Articles”

A Dozen Years of Progress

Here I am again, trying to offer a balanced look at AMD. Rumor has it the wet folks are wondering when they will get consistent coverage of their issues. Dunno.

When are we getting someone with wet AMD to write for us? You write. We publish. Until then, I can throw a few pages together, but my problem is dry. I cannot even begin to speak to the subject as well as someone with wet could. Consider it.

Found an article from BrightFocus Foundation. Title: How Effective are Age-Related Macular Degeneration Treatment? At the risk of sounding like a broken record, I like how the author points out there were very few treatments a scant 12 years ago. As the baby boomers we continue to drive many, many things in the world. Pig through the python; yes? We are now losing our vision and unless something is done, we are going to break the bank with our care needs. People respond to numbers, large numbers.

Which brings me to, did you know there are something like 200,000 new cases of CNV (wet AMD) every year in the United States alone? That is from CATT at 2 years: the facts.

I got to the CATT study because the BrightFocus article (above) referred to it. It is a 2010 study that seems to remain pertinent today. It was mentioned with ANCHOR, MARINA and HORIZON. These are all efficacy studies for your ‘shots’.

In the ANCHOR and MARINA studies Lucentis was proven to improve vision several lines on the chart. This was in the short term. The HORIZON and CATT studies were longer term and in these some gains were lost.

The VIEW trials suggested Eylea every eight weeks is superior to Lucentis every four weeks. However, more study is needed.

Avastin is a cancer drug. Injected into the body, it inhibits growth of new blood vessels in tumors. It tries to starve those, nasty things. Off-label use of Avastin for CNV has shown similar efficacy to Lucentis.

A big selling point for Avastin is cost. The article suggests it is $50 a shot. The others are thirty to forty times that much! Insurance problems? Talk to your retinologist about Avastin.

The BrightFocus article ends with good news. Did I mention I like this guy’s attitude? He reported a more recent CATT finding was 50% of patients retained 20/40 vision in the treated eye five years after the start of anti-VEGF treatments. Only 20% had 20/200 or worse! What do you think of those apples?

Again, these gains are in little more than a decade. How can you doubt more great things are coming and coming fast?

OK. How’d I do?

written July 1st, 2017

Continue reading “A Dozen Years of Progress”

Thank a Mouse

This page is just me being inquisitive. If you are not up for me trying to figure out biochemistry, you might want to skip this page.

Looking at the medications they are using for wet AMD and the new treatment for dry AMD, lampalizumab, I noticed something.  Most of the generic names end in -zumab. What the hey? What is that????

To begin with, I discovered there are two suffixes, -ximab and -zumab.  Wikipedia actually has a whole list of medical suffixes but I am concerned about two right now. Those are the ones related to drugs for AMD. Suffice it to know that every suffix means something.  -olol for example will always mean a beta blocker. Of the two I am interested in: – ximab always stands for a chimeric agent that responds to more than one antigen;  and -zumab always stands for a humanized antibody.

See what I mean about just skipping this page?

Chimeric.  Now I knew what a chimera is. A chimera is a single organism composed of cells that should have made up multiple organisms. The organism  is made of genetically different cells. According to MedicineNet human chimeras were discovered when it was noted some people have two different blood types. The generally accepted ways a human chimera is formed are for nonidentical twins to share blood in utero or for one to absorb the other.

Once again according to Wikipedia, chimera proteins are produced through the joining of two or more genes that originally coded for two different proteins. The properties of the new derive from each of its ‘parents’. Naturally occurring chimera are often found in cancer cells; thus, it would appear, the wisdom of using manufactured chimera proteins to battle cancer (a genetic version of fighting fire with fire). Chimeric cancer cells happen because of random genetic mutation. Chimeric proteins in drugs happen by design. Read genetic engineering.

Forging ahead here, every drug ending in -zumab is a ‘humanized protein’. And, no, that does not mean it is kinder and gentler. It means that the base protein used in the drug probably came from a mouse. Generations of lab mice have had the very stuff of their being manipulated in the search for ways to improve our health. Think kinder thoughts about the little devils.

Because – actually two becauses – there are a lot of similarities between mouse DNA and human DNA, we can use mouse as the frame for our designer drugs. Because some of their proteins are foreign to us and would cause an allergic reaction, the proteins have to be ‘humanized’. Potentially offending sequences are cut out and replaced by sequences found in humans.

The idea is to produce proteins that will get into a sequence of reactions and somehow change it. In dry AMD lampalizumab weakens the immune reaction. Wet AMD drugs intercept the SOS message being sent by the eye. That is the one saying the eye needs more ‘supplies’ and new ‘supply routes’ (blood vessels) should be built.

So that is the answer to that burning question (you really were dying to know; I know). If you are taking a drug ending in -ximab or -zumab,  you are the beneficiary of altered protein sequences. Be grateful. Thank a mouse.

written July 1st, 2017

Continue reading “Thank a Mouse”

Blast From the Past

And now, you have been asking for it, I present WET AMD!

Not that I have any first hand experience with the stuff nor do I wish to but I found an article on the history of treatment and thought I should share it. Feel free to chime in.

Preview of coming attractions…or a review depending upon how fast Lin gets her AMD timeline done…the first treatment for wet AMD was laser coagulation in 1979. That folks was less than 40 years ago. That would have been when some of your parents were dealing with AMD and vision loss. Before lasers? Nada. Again, this is not your parents’ AMD.

Since zapping little, tiny bleeders was not an exact science (remember, this was before Blaster Master and other now classic video games. Few people were that skilled), there were some misses. That’s when they came up with Visudyne, a drug that helped to ‘light up’ the target. A specially designed laser activated the Visudyne which selectively destroyed the bleeders. Better but still not great.

The article, Macular Degeneration Treatment from AMDF, went on to talk about 3 problems with laser treatment of CNV bleeders. First, because bleeders may have been too large or poorly delineated, only about 10 to 15% of them could be treated with lasers. Second, there was a 50% chance the leak would reoccur in two years and third, 50% of the treated patients still had subfoveal leakage. Also mentioned was the possibility of technicians with bad aims and further, inflicted damage.

Anti-VEGF is put into use in 2004. We land a Rover on Mars. Lord of the Rings is best picture and Harold Shipman is found hanged in his cell in Manchester, UK. Remember 2004? That was not that long ago! 2004 seems like yesterday, but since then, 13 short years ago, in some parts of the world, Anti-VEGF has reduced the rate of legal blindness by 50%. Wow!

Of course nothing is perfect. Vascular function in the rest of the body has been a worry for some. However, stroke data has been inconclusive. There have been cases of eye infections, increased eye pressure, retinal detachment and floaters.

Not sure where we will be going from here with wet AMD. Some of the work being done on dry AMD will head off both cases of wet and GA. Recall wet and GA are both advanced stages of the disease. New delivery systems are being developed and researchers are kicking around phrases like platelet-derived growth factors, receptor antagonists and immunomodulatory therapy whatever they are. It is a brave new world and we are getting to be part of it. [Click here for the most recent review of research for both dry and wet AMD.]

There you have it: my attempt at fair and unbiased reporting. I will try to do some more about wet AMD but, frankly, the effort may not last. We really need someone to cover this ‘beat’. Any takers? Continue reading “Blast From the Past”

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