Hi! Server is down again. This does not bode well. I have two hours I could be working, but I guess I bother you folks again.
Like I said, Lin gives me stuff. This one she gave me with the warning I need to be good. Generally, that is advice that goes in and one ear and out the other. I am a brutally honest sort. One of my mother’s favorite questions for me growing up was “Can’t you lie?” I assume you get the point. [Lin/Linda: Sue is paraphrasing what I said. What I said to her didn’t include a ‘warning’. Whatever advice I DID give her obviously went in one ear and out the other. ::grin::]
The last article Lin gave me was the results of a poll taken by general ophthalmologists, retinal specialists, and patients with AMD. The poll asked for the highest priorities in retinal research. Number 1 was “the development of choroidal neovascularization.” Number 3 was “retinal hemorrhaging.” Both of these are, of course, related to wet AMD. The second one had to do with studying geographic atrophy, i.e. advanced dry AMD. Number 4 was “gains in vision.” Number 5 was “slowing vision loss”, and 6 was “serious ocular events.”
Now all of these are fine and noble areas of endeavor. I don’t have a problem with any of them in theory. So, why did Lin suggest I try to behave myself and not stir up trouble? Emotionally I have some problems with it.
Imagine a kid at Christmas. Her brother gets a train. She gets told there was nothing available for her they could buy. She gets nothing. The next year her brother gets a bigger and better train. It will run smoother and go faster. She gets nothing. Her parents tell her they thought there might have been something for her, but it didn’t work out. Maybe next year. Next year comes and brother gets all sorts of accessories plus an even better train. Nothing for our girl. Nothing available.
I am getting tired of being that girl. I go to the research and there are nine, different, exciting opportunities for advancements in Wet AMD research. The tenth one may be for dry AMD, but it is often something that has since “died” in clinical trials. No joy again.
Very selfishly, I feel we need to be first on the list. I appreciate you wet folks go blind more severely and much faster. I appreciate eye shots can be pretty horrible. The thought of having someone put a needle in my eye might make me want to throw up.
On the other hand, I would also like you wet people to try to appreciate what it is like to come to the table time and time again (or to the Christmas tree. Sorry for mixing metaphors) and come up empty. Think of the frustration and the demoralization of religiously looking, reporting great news for other people …but finding nothing for you.
Eye shots are horrible, but if they could come up with an eye shot that would stop the progression of this disease, I would be fighting to be at the front of the line. At least it is something. Right now we have nothing. [Just to be clear, the injections for wet AMD do NOT stop the progression of AMD. They work to protect the vision a person has. Sometimes, that only works as long as one is having injections. Sometimes, sadly, they don’t work at all or for long. In either case, there is no way of knowing ahead of time – it’s an injection-to-injection battle.]
So, yes, I get snarky, and I can be offensive. Some people don’t like my snide comments about how the wet people have another, miraculous advance coming down the pipeline and we have…nothing. Please just remember how blessed you are and wish your dry brethren a little bit more than nothing under the tree…and spare me a charitable thought when I look with jealousy on what you have. It is not easy out here.
August 28th, 2018
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