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

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

Bundhoo Sadick left a comment for Kamal D Shah
"we are not from india, we ars from Mauritius. we came in india only for the treatment of our little princess. "
Friday
Kamal D Shah left a comment for Bundhoo Sadick
"Hello Sadick, This is Kamal D Shah from Hyderabad, India. I am myself an aHUS patient. I was diagnosed with this disease in July 1997 at the age of 21. I totally understand the anguish you are going through and am so sorry for your loss. This is a…"
Wednesday
Samantha Blaszynski and Kamal D Shah are now friends
Sep 11
Kamal D Shah commented on Linda Burke's blog post aHUS Global Survey
"Yes it was Len. Thanks a ton! I used Firefox on my Mac and just completed the survey."
Feb 20
Kamal D Shah commented on Linda Burke's blog post aHUS Global Survey
"Hi Linda, I visited the link for English but there is no survey there."
Feb 19
Kamal D Shah replied to Linda Burke's discussion ADULTS with aHUS
"Thanks so much Dr. Kaplan!"
Feb 16
Kamal D Shah replied to Linda Burke's discussion ADULTS with aHUS
"Hello Dr. Kaplan, thanks so much for this information. I am an adult aHUS patient from India. Can you please give me the link to the site where I can register in the registry? Thanks Kamal"
Feb 16
Sumit Jindal left a comment for Kamal D Shah
"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. Thanks, Sumit Jindal"
Oct 29, 2013
Kamal D Shah left a comment for Linda Burke
"That's the least I can do Linda! I am glad you think of me as your go-to person for India."
Oct 29, 2013
Kamal D Shah left a comment for Sumit Jindal
"Can you please give me Swapnil's number. I wanted to check on how things area with Aarav. I forgot to save it the day he called. Thanks!"
Oct 29, 2013
Linda Burke left a comment for Kamal D Shah
"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!"
Oct 28, 2013
Kamal D Shah left a comment for Sumit Jindal
"No he has not. No problem. I will wait. Thanks"
Oct 25, 2013
Sumit Jindal left a comment for Kamal D Shah
"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. thanks, Sumit"
Oct 25, 2013
Kamal D Shah left a comment for Sumit Jindal
"Hi Sumit, this is Kamal D Shah from Hyderabad, India. I am an adult diagnosed with atypical HUS. You can call me on +91-9000202185 if you wish to. Please let me know how I can help. I believe you know someone who is in Manipal Hospital in Bangalore.…"
Oct 24, 2013
Kamal D Shah replied to Linda Burke's discussion ADULTS with aHUS
"Yes, it is true that such machines are bought by some badly run centers in India."
Apr 7, 2013
Kamal D Shah replied to Linda Burke's discussion ADULTS with aHUS
"We were probably in the water for about half an hour before we managed to get to safety. I had a series of exit site infections, then tunnel infections and then peritonitis. My aHUS has been linked to the CFH/CFHR1 hybrid gene.  I honestly had…"
Mar 30, 2013

Profile Information

Birthday
September 28
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
No
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results
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: http://kamaldshah.com

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…

Continue

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…

Continue

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…

Continue

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?

Thanks
Kamal

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

Comment Wall (14 comments)

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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.

Thanks,

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.

thanks,
Sumit
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 http://atypicalhus.ning.com/forum/topics/adults-with-ahus .'

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.
At 10:17am on February 22, 2010, Jodi Kayler said…
Hi Kamal, I saw your post on the Genetic Testing forum. My son is on Soliris and has no genetic mutation. Soliris is working great. Soliris targets the disease activity not necessarily the source of the disease. I would definitely explore Soliris for your transplant. Soliris has the ability to stop the HUS but also may act as an anti-rejection drug--and the side effects seem non-existant. I am hoping it has the ability to make transplants successful even on people who have lost a transplant in the past. Best of luck to you.
 
 
 

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The Foundation for Children with Atypical HUS 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.


NEW 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.

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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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

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