The Atypical HUS Foundation

Kamal D Shah
  • Male
  • Secunderabad, Andhra Pradesh
  • India
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  • Samantha Blaszynski
  • Len Woodward
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  • Deborah Deffenbaugh
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  • Cheryl Biermann
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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

Latest Activity

Kamal D Shah replied to Cheryl Biermann's discussion Seizures
"Thanks for sharing your experience Cheryl. I am going to be discussing this with my nephrologist in a couple of days."
Apr 6, 2016
Kamal D Shah replied to Cheryl Biermann's discussion Seizures
"Hi all, I wanted to get your thoughts on a problem I have been facing of late. About a year ago, I had one episode of a seizure. It was not during dialysis (I am on daily nocturnal home hemodialysis). I also had symptoms such as biting of my tongue…"
Apr 5, 2016
Kamal D Shah commented on Linda Burke's blog post Global aHUS Experts Meet in Barcelona at KDIGO Conference on Kidney Disease
"Awesome Linda! Great to have you there!"
Nov 20, 2015
Kamal D Shah replied to Linda Burke's discussion ADULTS with aHUS
"Len, people generally think research is something very distant for them. They don't believe they can contribute meaningfully to this. Maybe that's what it is? For me, research on better, cheaper complement inhibitors would be the only…"
Oct 10, 2015
Kamal D Shah commented on Jeff Schmidt's blog post Global Spotlight – India’s First Ever Dialysis Olympiad!
"Thanks Grace!"
Apr 3, 2015
Kamal D Shah commented on Jeff Schmidt's blog post Global Spotlight – India’s First Ever Dialysis Olympiad!
"Oh yes Cheryl. We had people from all over the country. We enjoyed ourselves as well!"
Apr 1, 2015
Kamal D Shah commented on Jeff Schmidt's blog post Global Spotlight – India’s First Ever Dialysis Olympiad!
"Thanks so much for posting this Jeff!"
Mar 31, 2015
Kamal D Shah is attending Len Woodward's event

Second UK aHUS Patients' Conference at Senate House University of London

June 27, 2015 from 10:30am to 5pm
Just over four years  since the First  UK aHUS Patient Conference was held ,the second conference will be held in 2015. Top aHUS and Complement experts  from the UK will be giving talks about the genetic and environmental factors which lead to aHUS and the research that is still needed and what part can  patients play in it. See More
Mar 29, 2015
Kamal D Shah left a comment for Linda Burke
"Thanks so much Linda! Have a great 2015!"
Dec 27, 2014
Linda Burke left a comment for Kamal D Shah
"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."
Dec 26, 2014
Kamal D Shah replied to Kamal D Shah's discussion aHUS India
"Thanks Grace! I am in touch with one of the authors of that paper."
Nov 21, 2014
Grace replied to Kamal D Shah's discussion aHUS India
"Hi Kamal! I noticed there is an abstract by Drs. Bagga and Sinha and the Indian Hemolytic Uremic Syndrome Registry on CFH antibody-associated aHUS. You may already be in communication with them, but if not, I thought you should know."
Nov 20, 2014
Kamal D Shah replied to Kamal D Shah's discussion aHUS India
"Agree entirely!"
Nov 3, 2014
Len Woodward replied to Kamal D Shah's discussion aHUS India
"That being so the gap in known incidence and prevalence and what is unreported must be thousands!! It is hard to comprehend the scale."
Nov 3, 2014
Kamal D Shah replied to Kamal D Shah's discussion aHUS India
"I don't think aHUS is rarer in India when compared to other countries. The vast majority of the cases probably go unreported given the lack of healthcare access to a large part of the population."
Nov 3, 2014
Len Woodward replied to Kamal D Shah's discussion aHUS India
"You are welcome Kamal It was very interesting to hear your plans for developing the Indian aHUS patients network and providing mutual support. AHUS seems so much rarer in India than in Europe or the USA given the size of India's population and…"
Nov 3, 2014

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)

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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.


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Membership is open to patients, family, friends, caregivers research and medical personnel.


The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.

Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.


NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.


Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
• • • • • • • • • • • •
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
more factoids...

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Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

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