My History

Entry Number 2 – My History

Well, so far I’ve had three readers of my first post. Whether they clicked the link by mistake or actually wanted to read it, that’s three more than I could have hoped for.

I myself have an incurable disease called Retinitis Pigmentosa. The bottom line of this disease is that over time I will slowly loose my eyesight. There is no cure for this at the moment. This disease usually kicks in when the person hits his teens.

When I was twelve I started seeing little black dots in my eyes. I showed it to a doctor and after a few tests, he gave us an explanation which basically meant ‘don’t worry about it too much’ and ‘come back if you think its worse’. I blamed the black dots to an eye accident I had a few years earlier where the pin used to fill a soccer ball flew into my eyes when the ball burst.

From the age of twelve to sixteen I was in boarding school. I didn’t really worry about the problem as I thought it was stable. After I came home when I was sixteen, I started finding it tough to ride my scooter at night, got headaches when the oncoming traffic had their high beams on, found it tough at parties, etc. I knew something was wrong, but I didn’t want to really acknowledge it. As they say ‘Ignorance is Bliss’. I didn’t tell my parents about it because I knew they’d make a fuss over it, go to different doctors, get innumerable tests done, etc. Anyways it continued like that even while I was abroad studying for three years. I’d always manage to find a way to consolidate my position in a difficult situation.

I finally got around to seeing specialist doctor in 2009 when the sight in my left eye deteriorated enough for me to notice. He recommended I go visit an eye hospital in Hyderabad, India, where one of the leading doctors in retina related diseases practices. The tests got done, and I was diagnosed with Retina Pigmentosa or Rod Cone Dystrophy. They told me that it is a genetic problem and at the moment there is no cure for it.

It had a name now… and all I could do is live with it.

My Objective

Entry Number 1: My Objective

I am starting this blog because I feel that there is a lack of networking or support setup for people with incurable or untreatable disabilities. Through this blog I hope to reach out to, take comfort from and counsel others with disabilities.

In my mind,  people with a disability can relate to another person suffering from a problem to a greater extent. This is particularly true when both people suffer from the same problem. As much as my family or friends try to relate to me, they can’t understand what goes through my head everyday. The hurdles I face in everyday life, the pain I go through, and ways in which I try and deal with them. My endeavor through this blog is to reach out and find people who I can relate to, without being judged or laughed at, without being self conscious or afraid of making a mistake.

Along with connecting with people, the aim of this blog is to share experiences, suggest alternate cures if something seems to be working for you (for example I am trying out reflexology), post material relating to breakthroughs in that area of medicine. This will make everyone who reads this aware of the options available to them and keep them up to date on what they can hope for in the near future.

I welcome anyone and everyone to join me in this endeavor since it will help increase the understanding of others and increase the exchange of thoughts, views and information.