macular degeneration, macular, diagnosis Optimistic for 2018 – My Macular Degeneration Journey/Journal

Optimistic for 2018

TGIF. Thank God it’s Friday! Not that the weekend is going to give me much reprieve. I have exercise classes on Saturday and a party on Sunday not to mention puppy parenthood, housework and several reports to write.

There is no rest for the wicked. Not that I have been exactly lax. This just seems to be a life with a lot to do…and I like it. I like it!

Nice to see in Newsweek and the Daily Mail that being busy and stubborn lead to longevity. Those of us with a strong work ethic, pure cussiness and a need to be in charge seem to take the years a little more easily.

There is certainly going to be a lot to do this year. In 2018 I turn 65 and need to navigate Medicare and some sort of other insurance for my cradle-robbed husband. My calculations indicate I am losing over $6,000 a year by still working at the school. My pension would pay a lot more. That and my ever failing eyesight suggest retirement from there and working full-time at the psychology practice may be the way to go. I still have some things to check out so we will see. Keep you posted.

We have a big project coming up at the office. We get to be involved in a statewide training for DBT this Spring. I have several ideas about what I want to do with that. I have discovered I really like to teach and I believe DBT is needed by our younger folks. I would love to introduce DBT in the schools.

Like I said, lots to do and I am optimistic about my opportunities. And that includes my opportunities for my vision.

Did you see Luxterna gene therapy is now on the market? Luxterna is $850,000 for a treatment! That is a hell of a lot of bake sales but I would expect many if not most communities would work to buy vision for some little guy or girl.

Remember Luxerna works by modifying the gene RPE65. RPE65 ‘recharges’ chemicals in the retinal pigment epithelial cells so they can still participate in the visual cycle. If they can reprogram RPEs to do that, how much longer before they can modify them for our diseases?

I have it on pretty good authority the APL-2 studies launch again this calendar year. That’s exciting. What is also exciting is I believe the Astellas Pharma stem cell trials will get going this year as well.

Progress is being made. Lin shared a recent article on how they are increasing the success rate for transplanted RPE stem cells.  Optimally RPE cells are to line up and form a single, functional layer of cells only one cell thick. This is everyone nose to tail, all facing in the same direction.

In order to do this the RPEs have to have well-developed primary cilia on them. Primary cilia are little, hairlike things that generally serve as the sense organs of the cell. Lab grown stem cells often don’t have the best cilia on them. When they line up, things can get a little wonky.

Kapil Bharti and the folks at the National Institute of Health have discovered a drug that helps RPE cells grow beautiful cilia. Beautiful cilia cause the RPEs to line up in pretty lines and the results of the transplant are more successful. Ta da!

So, optimistic about 2018? Oh, yeah. You just gotta believe. Every small step is progress. Once again: this is the best time in history to be going blind.

Best wishes for 2018.

Written January 5, 2018

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