Receiving my diagnosis of Retinitis Pigmentosa as a teenager, is a moment in my life that that haunts me from time to time.
Whether it is when I am discussing the way eye professionals deliver life changing news to patients (which needs to drastically improve), or when I’m reminded of the fear I had of waking up blind one morning, away from family. As the consultant told me that I could lose my sight in a matter of years, months, or even weeks, it led me to withdraw my university application. I am drawn to the fact that I wanted to make my Grandad proud and fulfil his wishes of his grandchildren wearing the “topi” graduation hat.
At the time, everything flashes before you and all of a sudden you doubt what you will be able to do without support, what ambitions may be achievable, will you still find a partner and have a family of your own, will you still be able to travel and work, have a social life and so much more that is second nature to the majority of people.
In that moment where your world feels like it is crashing down on you, feeling hopeless and alone, when your world is full of darkness and sadness, all you can question is, why me?
A searching of second opinions, cures or treatments begins and what you come across, is something you can’t believe. Hope, relief, desperation, something to cling onto that actually sounds too good to be true. Clinics all around the world telling you that they can treat your R.P., claims that further deterioration can be halted, even claims to improve your visual field. These Doctors provide you with documentation of research being approved, testimonials from others who state their sight has improved, and more so, that their treatment is ethically approved by the relevant bodies. Then the bombshell, the cost, thousands of pounds, and you need to maintain the treatment frequently to keep the improved results. All of this is false hope!
Personally, I know how this desperation feels like, I too searched and there are so many so-called professionals claiming they could either cure, treat or improve my R.P with the possibility of stopping it from getting even worse. It is a very painful time, as on one hand, you have people telling you that they can help you, even sharing positive results which other people have experienced, but on the other hand, your own consultants informing and quite strongly discouraging you to access these apparent ‘treatments’ that they could actually cause you more harm and damage to the remaining sight you have left.
The vulnerability, the fragile mind and heart, even the desperation and chance of getting your sight back, gets stronger and stronger, and can put you out of pocket of literally thousands of pounds and in some cases, in excess of £50,000.
Yesterday, I was reminded of that moment. That moment which I battled with. I just wanted to see. I just wanted my full sight back.
I have been living with this eye condition which has left me with no useful vision at all now, for over 25 years and although I feel that I am at peace with this, I do from time to time get reminded of the things that I struggle with, how I am made to feel by others as they perceive that I am not capable to do certain things, or even simply that I am just a second thought or my needs and I, a functioning human forgotten about. It does feel like you are constantly having to remind others that you can still do everything others can do, but may just need a little assistance, time, or adaptation.
However, yesterday, I was in a room full of professionals, journalists, fellow blind and partially sighted people and those from the sight loss sector, as we came to view the screening of a documentary called “Blind Faith”.
If you, like me, like Ramadan, like so many others that I have spoken to, have felt that despair, then please do watch this documentary with your family and friends, and please, please do share as far and wide as possible.
If your consultant has not mentioned any of these treatments that are said to cure your blindness, then it is not true. If it sounds too good to be true, then it probably is. If it is costing you your savings to fly across the world to have these treatments, it possibly is a scam. These are fraudsters; they are immoral cowards praying on our vulnerability and these bogus scammers need to be stopped.
Please speak to your own eye consultant first before parting with your money. The testimonials are probably done by paid actors. Do your research or speak to others.
Another good source of information is the Retina UK website, http://www.retinauk.org.uk
Thank you so much to Ramadan, Simon, and Nader for creating this informative and eye opening documentary. Professor Mariya Moosajee has done a fantastic job in raising this much needed awareness, that needed to be bought to the forefront. This was a hard hitting documentary which portrays the reality so many of us think about, go through or feel. Ramadan has done an incredible job in starting to bring justice for all of us to be careful, let’s support each other and spread the word.
You can watch the Blind Faith documentary on BBC iPlayer. Please see the link below.
https://www.bbc.co.uk/iplayer/episode/p0f8vnvm/bbc-world-news-blind-faith
“You don’t need sight to have a vision, find your vision and be the best, that you can be”
Bhavini Makwana
VisualEyes with Bhavini 
Thanks Bhavini for attending the screening of our film and I really liked your post about the journey of us living with RP and how our fears can lead us to be victims for such bogus and potentially dangerous treatments. Thanks for raising awareness.
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