Happy Friedreich’s Ataxia Awareness day. Friedreich’s Ataxia (FA) is a genetic, rare, life-shortening, debilitating neuro-muscular disorder, it usually diagnosed between age 5-15, it causes muscle weakness and loss of coordination in hands and legs; impairment of vision, hearing and speech; scoliosis, diabetes; and a life-threatning heart condition etc. Most patients confined to a wheelchair full-time by their twenties.
This is Janesh Wadhwa, 22 years old from Gurgaon, Haryana. I have this disorder, I was diagnosed at age of 10 and I was diagnosed with a serious heart condition around 15 which is almost common with FA.
Progression is the worst part of it, there was time when I used to run a bicycle, then I started to walk with the help of people, then with the help of walls and furniture in home and constantly progression is on its way and I don’t know what future holds for me, no one can predict how fast it will progress, any activity I do which uses physical strength is kinda difficult for me to do and takes longer than normal.
There is currently no effective cure is available for it, but conviction is growing that cure will be available in this era, anyways physical exercise is the key to handle it, it is must to keep my muscles working.
I rise today because it is “Friedreich’s Ataxia Awareness Day”, it is recognized on the third Saturday of May every year to raise funds for research organizations who promises for a cure, so I want to spread the awareness because it is important in the journey of hope for a cure.
I went to school till 8th with many problems like walking, carrying bag, writing notes etc. but managed somehow, and then I left the school because things weren’t suiting with my needs and started to stay at home and then I studied till 10th through Haryana Open School but I had to use writer in exams because I wasn’t able to write quickly at that time.
At age 19-20 I started using wheelchair because walking wasn’t quite easy for me anymore, many people still see the wheelchair as a sign of defeat, but it has helping sides too like it helps my independence; I can go to places without having to depend on anyone, my place is almost totally unfriendly for wheelchair users though, so it is kinda hard to get around but I try to do.
When I was in school my mates used to call me by names because of my walking problems and I couldn’t involve in activities like others, but I can’t blame them because even I wasn’t totally aware with its symptoms and description, at that time I hadn’t heard anything about it, I can blame the rareness; that’s why I want to turn the “rareness” into “awareness”, rareness of it affected on my childhood.
I gathered all the information what I have about my disorder from Internet and I met many FA patients around the world on social networking site, I also got to know about someones with FA from India as well, it is a nice feeling to talk and share views with people who are in the same position as you.
I often meet people in life who think that I have some problem with my intelligence too but I would like to let you know that it has nothing to do with my brain, my disorder is only physical, to the casual observer FA patient may seem to be drunk.
Once a girl asked me “Are not you alright or are you drunk?”, I just smiled at her and explained “I don’t drink, it is because of FA, actually my eyes don’t have enough energy to stay open normally like yours or others”.
On this day I also want to make people realize that I am just a normal person like you or anyone else and because of my physical disability I should not be treated differently, the only difference I have is that I need some supports at times, if you despite those differences then I am not less of a person than anyone else, I just have different needs.
After more than 11 years of my experience with this disorder all I can say is, it has not been easy to live with it; believe me. I pray to God for all of my fellow FA patients, may God keep his healing hands upon us soon.
If you want to get more information about this disorder or if you want to help by donating money to find the cure then you can go online and search about; there you will find many ways for it, I applaud the website www.curefa.org of FARA (An organization working for its cure).