Solving the Problem with Stem Cells?
I was going to go on to iPads and tablets. However I saw that topic was addressed recently so I will save my take on it for later.
Using DBT since day one
Instead, I want to go off in another direction... if you followed me on another site, you know I teach dialectic behavior therapy. DBT teaches emotional and social life skills. It’s good stuff. I have used it with myself from almost day one of this journey.
DBT teaches there are four ways of approaching any problem. You can solve it. You can change the way you feel about it. You can do something to help tolerate it or you can be miserable. I have done the last three in that list quite a bit. Trying to avoid the stay miserable part, of course. What I have not done all that much of is solve the problem.
The problem is dry AMD has no cure
You all pretty much know why. Dry AMD is a condition with no cure. I suspect most of us had that little bit of info layed on us the day we were diagnosed.
It is my nature to be stubborn. I don’t normally accept no for an answer. Once I had my diagnosis, I went “shopping”. What I was looking for was a cure. Barring that, a treatment. Barring that, I intended to hitch my wagon to a star and use that star to soar... right to the solution.
My hope in stem cell research
Early on I decided I really liked the idea of stem cells. (I still believe the answer will ultimately be found in the realm of regenerative medicine.) The research I had done revealed there was a world-class retinologist, Dr. Carl Regillo, right here in Pennsylvania and he was doing stem cell research. Better yet, Regillo had offices within two hours of my home. Regillo became my star! He was where I was going to hitch my wagon.
Fast forward three, long years. I have been making my husband drive two hours one way, twice a year all of those three years. I have religiously gone to see Regillo and then his substitute. Every time I have gone for my appointment I have been referred to the research team. That is something like six referrals folks.
Waiting for entry into a stem cell study
I am a good candidate for the position of lab rat. I know I am. They know I am. The stem cell study required vision much worse than mine. Lampalizumab fell flat in phase 3 trials. I waited on the proverbial bench.
Until now.
A clinical trial using APL2 treatment
I am in a clinical trial. For the past few weeks I have been traveling to appointments. I do believe I have had most of the vision evaluations known to man. I have been poked and prodded and turned every way but loose but I AM IN!
The treatment is APL2. It is a complement factor inhibitor. That means it interferes with the autoimmune response in my eyes. If it does what it is supposed to do it will slow the rate of deterioration of my eyes by up to half.
My plan to regain vision
Like the old Soviet Union, I have five, ten, etc year plans. First I slow the rate of deterioration. Then I get in a study to see how stem cell retinal pigment epithelial cells grow in those who received APL2. By that time they should be close to implanting photoreceptors. My plan is to ride this star all the way back to vision.
So tomorrow is the big day. Tomorrow I start the study. I may not be quite scared to death but I am plenty anxious. The compound gets injected into my eye!
Editor's Note: As of August 2023, 2 drugs known as complement inhibitors — Syfovre® and Izervay™ — have been approved by the US Food and Drug Administration (FDA) to treat the advanced stage of dry age-related macular degeneration, or geographic atrophy (GA).
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