For the first six years after my diagnosis, I hid my disease. I didn’t want anyone to pity me or think less of me, and I didn’t want Retinitis Pigmentosa to define who I was.
Even after I started writing about my experiences with the disease in essays and a memoir, I steered clear of Facebook groups or other online communities that would connect me with fellow RP sufferers because I didn’t want the constant reminder that I was losing my eyesight.
The irony in all of this is that when I finally decided to DO EVERYTHING in my power to save my eyesight and began doing more avid research into treatment options, I discovered that there are plenty of people out there who are searching for solutions, and they are sharing their findings in online groups.
If you’re not already a member, I highly recommend that you join the RP Research and Treatment Group on Facebook. It’s filled with discussions and posts on everything from alternative therapies to the latest progress in gene therapy and retinal implants.
Along with staying on top of different treatments and supplements available, my decision to finally connect with other RPers has put me in contact with people who are devout RP treatment explorers and are doing their own pilot studies and personal experiments to try to halt the progression of RP and eventually reverse this disease.
While advancements are continuing to be made in the medical community, the hard truth is that RP is a backburner disease when it comes to funding and research because of its relative rarity compared to diseases like age-related macular degeneration. But that doesn’t mean we’re doomed. The key is to pull together, keep trying new things, and keep sharing experiences and resources. Because RP is an umbrella term for a group of disorders, there isn’t a one size-fits-all-solution for this. But by sharing information and personal experiences, we can help each other find viable treatment options to halt or at least slow the progression of this disease until a cure is available.And who knows, maybe one of us will be the one to discover the cure.
I think this is one of the greatest things about the internet – the way people going through anything out there can come together and create support groups and networks. And not only can those be an immense relief emotionally – as you point out, they can also be a helpful resource when it comes to trying to find solutions to an issue or health problem. Thanks for highlighting this group here – it’s great to know that the RP community has come together and is working hard on its own to help each other. All the best to all of you!
Power in numbers!!
It’s great to have a support group of people who KNOW what you’re going through and dealing with on a daily basis. It wasn’t until recently, that I realized how much I ‘need’ to be around friends with spinal cord injuries. It’s so comfortable to not have to explain everything, to understand and know that I’m being understood with a knowing glance.
“Two heads are better than one.” Why “reinvent the wheel”? Working together can only be a POSITIVE thing when it comes to problem solving, not to mention the comraderie and moral support.
Always in your corner and a huge fan Mrs. Ricks!! xoxo
Dear In grid,
R.P has been a real learning experience center for me. I used to be a very outdoor person before I had R.p. I used to practice martial arts from a very you g age and loved Competing in various national and international martial art tournaments. I was planning to be either a pilot or join the police force. I came to know about my R.P when I was 24 yrs old. The doc diagnosed my ailment and told me that I had an incurable disease which didn’t hav a cure and that I would grow blind eve tally. I now remember telling the Doctor that I would never grow blind. On researching over the net afterwards I was hit by the enormity of the situation. I being from north eastern India didn’t hav much access to information as our states are quite cut off from mainland india. I am living at Arunachal Pradesh which is a state bordering China. We don’t hav many blind people in our part of the country so I had to learn everything on my own. I had a tough time combating depression and I have to admit that I do get depressed even now. But I hav learnt to accept. n compromise with my circumstances. Getting to know you and reading your blog is the biggest turn in point in my life. I have to thank my elder brother for pointing out your article for me. After a very long search i had at last found someone e who was like me undergoing the same problems like me and determined to see like me. I read everything i could about you. Infact the first day i came to know about you i stayed up the whole night reading your articles and blog and re read them about the times at a stretch (grin) . I was struck and immediately drawn to your positiveand never say die attitude because i hav a similar attitude too. I religiously followed all the tips about juicing and lifestyle makeover you suggested. I printed your articles and used to carry them with me during the day too as. They provided me with a certain sort of confidence that I had lacked earlier. Meeting you in person on Facebook was a dream come true. I am very happy and healthy these days. I want to thank you for your articles which I hav shared with many of my r friends. You make a great difference for us in this dark r world. I am happy and priveliged to know you and call you my friend. THANX YOU FOR HELP ING ME TO BE DETERMINED TO SEE.
God bless you and give you good health.
What an incredible note to find, Allen. Thank you for this. Your words have also brightened my world. By pulling together, I know we can beat this. WE ARE GOING TO KEEP ON SEEING. Wishing you an amazing week. Best – Ingrid