Most people who receive a diagnosis of Retinitis Pigmentosa (or any of a certain family of retinal conditions) usually also receive the hopeless news that there is no treatment and that their vision will very likely continue to deteriorate over time. How much? No one knows. How fast? No one knows. But it so turns out there is actually a lot you can do, or at least try to do, to take matters into your own hands and maximize your chances of preserving your vision – or possibly even more than that for some people!

هل هو صحيح أنه لا يوجد أي علاج إطلاقا لمرض إلتهاب الشبكية الصباغي؟ الفيديو ده بيجاوب على السؤال ده بالعربي و بالانجليزي.

Instagram @mahatkhalil
Patreon
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Sources (more will be added here over time):

Books:

Stem Cells Heal Your Eyes, by Adam Miller, Carlyle Coash, and Damon P. Miller,
Audible: https://www.audible.com/pd/Stem-Cells...
Kindle and Amazon: https://www.amazon.com/Stem-Cells-Hea...
Despite a somewhat misleading title, this book may be the most useful sources on this list!

Amazing Grace: Autobiography of a Survivor, by Grace Halloran Ph.D.,
Audible: https://www.audible.com/pd/Amazing-Gr...
Kindle and Amazon: https://www.amazon.com/Amazing-Grace-...


Videos:

Patient Education Webinar - Managing Retinitis Pigmentosa, Ushers Syndrome, Cystoid Macular Edema,    • Patient Education Webinar - Managing ...  
This entire channel is great!

My previous video about the transcorneal electric stimulation device (which is a therapy that aims to increase oxygenation of the retinas among other things),    • Transcorneal Electrical Stimulation T...  


Websites:

http://acuvisiontherapy.com/


Peer-reviewed (and rather technical) sources:

Systematic review and meta-synthesis of coping with retinitis pigmentosa: implications for improving quality of life, https://link.springer.com/article/10....

Randomized controlled trial of electro-stimulation therapies to modulate retinal blood flow and visual function in retinitis pigmentosa, https://onlinelibrary.wiley.com/doi/f...

Role of oxidative stress in Retinitis pigmentosa: new involved pathways by an RNA-Seq analysis, https://www.tandfonline.com/doi/abs/1...
(This article was retracted due to a dispute regarding non-consensual use of raw data that belongs to one of the author. However, the science still holds and the PDF is still available at the above link.)

For people residing in Egypt and looking to self-educate or find helpful resources for Retinitis Pigmentosa:
لمن يبحث عن معلومات أو مصادر في مصر متعلقة بأمراض الشبكية:
Private Facebook Group: Retinitis Pigmentosa – Egypt,   / 1607914262809466