I have a theory of my RP disease process. Notice I say “my” because that is where my theory stops. I think the many types of RP probably have distinct disease processes. They get put in the same category because they present clinically in similar ways. Unless there is a very obvious difference, such as degenerative hearing loss, they are placed in the same category.
I believe one of the types of RP has a systemic autoimmune component. Its differences are more nuanced and the associated conditions have not been linked together as being part of the RP picture. I am by no means an expert. I am just some lady blogging on the internet, that is it. Of course, when the experts can offer you the technological equivalents of the wheel and fire, in the form of a cane or a dog, you learn to fend for yourself relatively quickly.
In my case, I believe there is an RP gene(s) that was triggered. My mom most likely has the same gene, but did not experience a trigger which explains why she only has night blindness and no substantial vision loss. So, this trigger could have been a virus, who knows? At this point, it does not matter. Then, the cells in my retina began the process of apoptosis, a type of cell death. This was followed by my immune system perceiving the clumping cells as a foreign invader. My immune system then started to produce antiretinal antibodies. This started the process of my retina being attacked by my immune system as well as the cell death which was the result of the genetic expression.
Dr. Sapse and Johns Hopkins have both published work on antiretinal antibodies. The hard core scientist will tell you there is no evidence of the antiretinal antibodies causing a problem. Well, I am a betting woman and, at this point, the odds are looking pretty good that these antibodies are not just some harmless byproduct of the disease process. Why not assume they are causing some of the issues? It is possible to manipulate them and see what happens. For me, personally, blindness is a pretty big floor effect. Why not take some risks if an adult is open to them?
When I received the stem cell implant, I believe the cells homed to the damaged subretinal space. I believe they started to do some repair work. Then, the underlying cocktail of apoptosis and autoimmune function kicked in on the new cells and they went the way of the old ones.
So, it will be interesting to see if the navaldipine, which supposedly controls the apoptosis to a degree, will result in a correlating decrease in antiretinal antibodies. If so, I believe the stem cells have a chance of not only warding off degeneration but doing some regenerative work. It is a matter of creating a safe environment.
The next phase may present the need to not only control the apoptosis but the immune system. Maybe once the apoptosis slows, the number of antibodies will decrease. Who knows? It will be interesting to see, nonetheless.
Subscribe to:
Post Comments (Atom)
2 comments:
Perhaps many diseases are lumped together similarly. We know there are multiple treatment options for most diseases today. You have chosen wisely to be an advocate for your own health and the best treatment options (present and future). Another example which comes to mind is autism. Children with ADD, ADHD and a variety of other learning challenges are now all under the umbrella of autism spectrum disorders. Different treatments and therapies work for different children depending on a variety of factors. Networking and sharing information among families and doctors seems to benefit everyone in the community. Take only what is meaningful to you from the experience of others willing to share. We are stronger together than alone.
Good point. I feel the current model of clinical trials in this country runs counter to the interests of patients looking for a therapeutic intervention in a timely fashion. If we test one variable at a time and most conditions are best treated with multiple interventions, then how are we ever going to make progress in the area of multi factorial degenerative diseases? In my opinion, it is this cumbersome, exorbitantly expensive process that is the reason more progress has not been made. It is not for a lack of innovative people or ideas, that is for certain. It is, once again, a systemic failure. And who is the worse off for it? Patients who have virtually no voice in the matter.
Post a Comment