My primary disease, Atypical Hemolytic Uremic Syndrome (aHUS) is classified as an ultra-rare disease. It affects about 1 or 2 in a million people.
Look at this from a doctor's perspective. A regular nephrologist would hardly see a handful of cases in his or her entire career! What is point in spending time in learning about this disease when there would be such little impact? The chances of anything new being learned to be actually put into practice would be almost zero! Why, then, must he or she not spend time on something that yields more 'bang for the buck'?
What about the pharmaceutical companies? When the total target population is a few hundred across the world, what incentive would be there for them to spend huge sums of money on research for drugs that could treat this disease? Its not like all the other possible work is exhausted and this is the only disease left, right?!
Where does this leave the Atypical HUS patient?
With little information forthcoming from doctors, not much advancement from pharmaceutical companies, we are left languishing, struggling to get back to 'normal'.
The situation is much worse in countries like India. While patients in some countries have access to Eculizumab, the one drug that could change their lives, India is not even on the radar for Alexion Pharmaceuticals to launch this drug in.
Why can't the drug be brought to India by patients who need them? It costs about Rs. 3.5 crore for a year's treatment and it could potentially be needed life-long. If there was a God, I would say, he has a sick sense of humour.
In all this gloom, it is important to find support. To reach out to people who are going through this hell just like you. That is why I started the Atypical HUS India Foundation. We have a website, a Facebook group and a Twitter account as well.
Chances are that you have nothing to do with aHUS. Chances are that the only place you've heard about this dirty disease is from me. But I would be really happy if you would take a minute, visit the website, like the FB page and follow the Twitter account (you can disable notifications if you like). The number of posts will anyway be very few. What worries me is when someone new is diagnosed with the disease, they would not find all this and that would rob them of a chance to get some support in dealing with this.
I plan to slowly add a forum and a latest news section in the website. I want to let Atypical HUS patients in India and their families know: You are not alone!