Posted in Follow up letters

Outer Retinal Atrophy

Posted on by One Vision
Outer Retinal Atrophy.

This was written on my follow up letter also, after I had my consultation with the specialist a few weeks ago.

I really cannot find out much about what this means and because the letter came afterwards couldn’t ask. I will have to wait until I see him again.

So really don’t want to put my findings here incase they aren’t correct.

Don’t think I want to know.

Will post at a later date about this when I find out.

Posted in The Medical Stuff

Pigment epithelial detachment – PED Macula

Posted on by One Vision
Letter explaining I have retinal atrophy and small ped detachment

As well as Macular Dystrophy, I have a Pigment epithelial detachment (PED) which means that there is fluid, drusen, tissue or blood filling up, making a detachment at the macula which is in the retina.

I need to find out if this will get worse or can be treated.

Mine has been observed in the right eye at the macula.

This is why my right eye is the worst for me and has been giving me problems. This is why I think the black blob appears sometimes.

I will ask about this in more depth when I see my consultant again and if this is related to my condition or just bad luck.

Still waiting now on an ERG and then appointment to go back to see my specialist again to see the results of all the tests.

Posted in Research for a cure or treatment for us, The Medical Stuff

Stem cell research for Stargardt Disease

Posted on by One Vision
Research for a cure ☺️
At the moment, Stargardt’s, Macular dystrophy, is untreatable.
A number of novel interventions are currently under investigation, including stem cell therapies.
Stem cells are a special type of cell which, when put under the right conditions, can develop into many other types of cell including those found in the macular. It is hoped that new cells derived from stem cells can be grown in a laboratory to be transplanted into the eye to replace areas of dead or non-functioning cells.
Stem cells can be sourced from a number of places including blood, bone marrow, umbilical cord and fertilized egg cells.
Researchers are involved in the first ongoing stem cell trial for Stargardt’s. More research will need to be undertaken in the future to determine to what extent stem cell therapy might help improve vision for people with Stargardt’s and the other conditions know as Macular Dystrophies.
This is ongoing and will hopefully turn out to be a cure or treatment for Macular Dystrophies.
Until then, we have to protect our eyes from further deterioration by using UV and blue light blocking, polarized sunglasses, make sure we don’t take onboard too much vitamin A, but don’t deprive yourself, as we need Vitamin A for good health elsewhere. Just don\’t take supplements with this vitamin included. Vitamin A causes the build up of lipofuscin, as our eyes do not process the waste correctly, causing the central vision to fade.