The Atypical HUS Foundation

Kamal D Shah
  • Male
  • Secunderabad, Andhra Pradesh
  • India
Share on Facebook Share

Kamal D Shah's Friends

  • Samantha Blaszynski
  • Len Woodward
  • Nicolas
  • Deborah Deffenbaugh
  • Jill Ziegler
  • Grace
  • Cheryl Biermann
  • Donna Kolp

Kamal D Shah's Discussions

aHUS India
9 Replies

This forum is for patients, caregivers and medical professionals based out of India.Things are very different in India from many other countries. Most people have to pay most of their medical…Continue

Tags: India

Started this discussion. Last reply by Kamal D Shah Nov 21, 2014.

Is this aHUS?
3 Replies

I recently met a 3 year old boy who is suspected to have aHUS. The boy was asymptomatic until the beginning of February. He started passing cola colored urine at this time. Investigations revealed…Continue

Started this discussion. Last reply by Cheryl Biermann Mar 1, 2010.


Kamal D Shah's Page

Profile Information

September 28
Do you have a friend or family member diagnosed with aHUS?
I am an adult aHUS patient.
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
My membership request involves business interests as I seek additional aHUS information for business applications.
My child ( or myself as a patient) is best described as:
Anti-FH-Ab (CFHR1/CFHR3)
I am a 34 year old male living in India. I was diagnosed with Atypical HUS in July 1997, when I was 22. I had taken some vaccinations - Typhoid, MMR and Hep B - a prerequisite for travel to the US. I was going to the US to pursue my Master's in Chemical Engineering. Within a couple of days of taking the vaccinations I started feeling sick - nauseous etc. A few blood tests later, I was told I had HUS - and kidney failure. A biopsy later confirmed the diagnosis.

About a month or so of starting dialysis, plasma pheresis was tried (3 sessions). No luck. I was then put on prednisolone. My kidney function improved. But I caught a lung infection and the drug used to treat the lung infection caused the kidney function to decline again.

I had a transplant in Nov 98. My mother donated. Within 11 days of the transplant, problems started again. A biopsy showed either Recurrent HUS or Cyclosporine toxicity. They're not sure which it was.

I then was on PD for 6 years. Got caught in the Tsunami of Dec 2004 on a holiday in South India. Tunnel infection followed. Treating did not help. Peritonitis ensued.

I then switched back to hemo. Caught Hep C at some center during this time. Then switched to home hemo. Currently on daily nocturnal home hemo.

I am now researching on the options for a second transplant.

I have a blog which you could visit for more details:

Kamal D Shah's Blog

Platelets plummeted suddenly!

I was diagnosed with aHUS about 16 years back and have been on dialysis ever since with an unsuccessful transplant about 15 years back.

I am currently on daily nocturnal home hemo. I use 10,000 units of heparin. Suddenly my platelets have plummeted to 31,000! There have been no symptoms of a low platelet count. I repeated the test and the value is right. My hemoglobin is 11.8 and WBCs are 2,700 (my WBCs have always been around that). I have been asked to run tonight heparin free which…


Posted on February 11, 2013 at 10:27am — 9 Comments

Best option for a transplant?

Hi all,


Here's a brief summary of my medical condition:

- Diagnosed with aHUS in July 1997 following vaccination

- Immediately put on hemodialysis

- Transplant in November 1998 - mother donated

- Recurrent HUS after 11 days

- Back on dialysis

- On PD for 6 years

- Currently on daily nocturnal home hemodialysis

- Hepatitis C Positive

- CFH/CFHR1 hybrid gene detected

I would like to go for a…


Posted on July 8, 2011 at 1:08am — 6 Comments

Co-morbidities of long term kidney disease catching up with me

I have been on dialysis for 14 years now. 14 years! Gosh, that's long! I was diagnosed with aHUS in July 1997.


A few months back, I started noticing my skin become increasingly brittle, prone to cuts. I also started getting blisters on my hands and feet. I showed this to my nephrologist who asked me consult with a dermatologist. The dermatologist said this could be a condition called…


Posted on June 24, 2011 at 9:24pm — 6 Comments

CFH/CFHR1 hybrid

Hi all,

I had sent my blood samples to Dr. Goodship's lab in the UK. They got back to me saying that I had an abnormal form of Factor H called CFH/CFHR1 hybrid. This, they added had an 80% chance of aHUS recurrence after a transplant.

I guess Soliris will help with this as well going by all the news.

Does anyone else here have this genetic abnormality? Any idea what this means?


Posted on October 23, 2010 at 10:03am — 4 Comments

Comment Wall (15 comments)

You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

At 11:09pm on December 26, 2014, Linda Burke said…

Thinking of you today, on the 10th anniversary of the tsunami that affected India and surrounding countries.

As a survivor of that terrible time, I wish you peace and blessings in the coming year.

At 6:50am on October 17, 2014, Bundhoo Sadick said…

we are not from india, we ars from Mauritius. we came in india only for the treatment of our little princess.

At 2:06am on October 29, 2013, Sumit Jindal said…

Hi Kamal, 

I have sent you a message on your mobile number.

Yesterday night Aarav was to go through 5th Plasmapheresis cycle. I have still to talk to Swapnil regarding that.


Sumit Jindal

At 10:59pm on October 28, 2013, Linda Burke said…

Hi Kamal,

Many thanks for being our 'go to' person to assist aHUS patients and their families in India - what a wonderful resource to have such a knowledgeable, compassionate person to provide aHUS insights!

At 12:39am on October 25, 2013, Sumit Jindal said…
Hi Kamal,

thanks for contacting me. Hope you are doing good.
we were thinking of leaving some query on your blog yesterday only.
Swapnil (Aarav father) might have contacted you already.

At 9:49am on December 4, 2012, Linda Burke said…

Hi Kamal,

We just began a newly featured forum for adult aHUS patients, if you'd care to check it out.  Hope all is well with you and yours...


'Our thanks to Jennifer Christopher for starting this important aspect of outreach and discussion among aHUS adults!  Her insight has highlighted a need for a dedicated 'Forum for Adult aHUS Patients', so please visit our newly featured forum for adult aHUS patients to share their journey and to post concerns and questions.

Join the conversation at .'

At 2:19pm on August 25, 2010, Joy Lewis O'Brien said…
Thanks, Kamal!
At 11:01am on March 16, 2010, Joy Lewis O'Brien said…
There's very few places that do the genetic research, but there are a lot more facilities that have the lab equipment available to do the genetic testing. I'm wondering if one of the labs in India that can do other genetic testing could get the protocol (it's a set of enzymes, I think) from one of the labs here in the US or Italy.
At 8:37am on March 16, 2010, Joy Lewis O'Brien said…
Hi Kamal,
Yes, the lab in Italy does take about six months--they do a very complete sequence of the gene. If I recall correctly, the lab here in Iowa took about six weeks for me, and about four weeks for my brother (I think my samples might have coincided with a school break). My local research hospital also confirmed the results and it took about 3-4 weeks. I wonder if a researcher could send the protocol to a lab or researcher in India for you?
Let me know if you know of a lab in India that does genetic research--that might be an interesting avenue for you.
At 9:40pm on February 22, 2010, Kamal D Shah said…
Thanks Jodi. Yes, I hope too. The only problem is it may not be available in India. I am still looking at different options.



© 2018   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service