Why me? An answer at last!

I recently stumbled upon a site for atypical Hemolytic Uremic Syndrome (aHUS), the disease that I have. It is such a rare disease - there are only about 300 people who have this disease in the US. A very small part of that group are adults. Most are children.

I found something extremely interesting on the site. For years I have wondered why I got this disease. It happened immediately after the vaccinations which were a prerequisite for foreign travel. I was scheduled to go to the US for my Master's. The day before I was vaccinated, I was totally all right. In fact, I remember going for a swim at the Secunderabad Club where I swam. I was totally normal. The next day I took these vaccinations. Boom! Within a day or so, my kidney function deteriorated and within a week or so I was on dialysis. So, when you look at the sequence of events, it does suggest that the vaccines had some role to play.

No doctor would suggest this however. They would all be equivocal. They did not know. I was doubtful myself about this because thousands of other people had taken the same vaccinations. Then why was only I affected? This remained a mystery all these years.

On this site, however, as I was going through the forums, I chanced upon a thread titled "Vaccines". I went through the thread. I was shocked to read that there were others too who had been affected with the disease after getting vaccinated! I have been digging up a lot about the disease over the past couple of weeks. This is what I found:

There are some defects in the genes of people who have aHUS. The defective genes have been identified for about half the cases. Slowly, the other genes are also being identified. These defective genes cause a person to be 'more predisposed' to getting aHUS. It does not mean that every person who has these defective genes will get aHUS. But it does increase their chances of getting aHUS.

This is where triggers come in. There are some triggers like infections, vaccinations and pregnancy that could cause the disease to be activated.

So, here's the story in my case: I probably have one of the genetic defects that have been implicated in aHUS (or will soon be). The vaccinations actually triggered the disease. So, it is possible that I could have escaped the disease had I not got vaccinated. And the others who got vaccinated did not get the disease because they did not have the genetic defect.

Interesting, no?

But, I feel relieved that finally I have some logical answer to the biggest conundrum of my life - why did I get this disease!


Anonymous said…
very intersting. I didn't know that you did not know why it happened.
IGA Nephropathy said…
To Anonymous: 90% of all diseases..we do not know why it happened ...
Anonymous said…
I'm happy we know the trigger now but wonder if fate could have given you a chance...no US admissions, etc that would have sounded painful but you would never been vaccinated and avoided the pain that began...

But as the Gita says, if it is so, it cannot be otherwise !
Dinesh Aditya said…
I lost a cousin in his 20s because of a triggering mechanism from a random infection caused a latent condition called Steven-Johnson syndrome to surface.

I wrote a while back about something similar - http://dinesh-aditya.blogspot.com/2009/02/1-every-14-million.html

Anonymous said…
Glad that our website helped you find some long overdue answers. I am one of those people with the genetic mutations, but no signs of the illness. The same mutations as my sister and my son who do have aHUS.
Heather S.
Anonymous said…
thanks iga
Wonderful analysis Kamal. Kudos to Kamal!!!

Its really appreciated for your continuous exploring!