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Kamal D Shah
- Male
- Secunderabad, Andhra Pradesh
- India
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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 th…
Started this discussion. Last reply by Cheryl Biermann Mar 1.
Kamal D Shah's Page
Latest Activity
Hi, Kamal,
If you follow the patients who are receiving Eculizimab, (Soliris), there are patients who have no known genetic mutation but have had wonderful success in preventing further damage to their kidneys and other organs. Based on this, I thi…
Kamal,
Yes I ran across the drug you mentioned for the Factor H. I believe there is a company in France that is working on the factor h replacement drug. They from what I read are in the beginnings of the prcess. But it is also very promising. I ran…
Sorry, Kamal, for the frustrating technical glitch. I wonder, too, whether at this point past medical history (ie recurrence post-transplant) is more telling than any genetic test, but some doctors really want those test results.
In this country it…
Hi Kamal, you must be feeling so disappointed right now, I know that i would love to have an answer as to what genetic mutation my son has. As far as i know i dont think knowing what mutation you have really makes too much of a difference in regards…
I had sent my blood samples to the Mario Negri Institute in Bergamo, Italy for genetic testing. They could do only the ADAMTS13 gene and for the rest of the tests, they got back saying that the DNA could not be extracted!
I have no idea why. I am re…
Hi all.
Yes, we were in contact with Taligen as recently as maybe 2 1/2 years ago. We did some work for them regarding patient's genetic testing. They were quite excited to get the information, although we were no where near done when the news abou…
Hi there Kamal - I know that Bill Biermann had been in contact with Taligen over the last few years regarding this - but hadn't heard anything from him lately - maybe he or Cheryl will chime in? Thanks!
Has anyone heard about the new drug TT30? I just came across this link:
http://www.businesswire.com/news/home/20100823005362/enIt basically says that a company called Taligen has been granted a patent for a new drug, TT30, that targets Complement Fa…
I am a 35 year old from India with atypical HUS. I was wondering if it was possible for me to undergo a transplant in the US. If I brought the donor with me, is it possible to have the transplant in the US. What would be the approximate cost for thi…
Has anyone heard about the new drug TT30? I just got this link: http://www.businesswire.com/news/home/20100823005362/en
It basically says that a company called Taligen has been granted a patent for a new drug, TT30, that targets Complement Factor H…
This is excellent news! I will be waiting for updates from you. I am also an adult with aHUS considering a transplant. I think this is the first time Soliris has been approved for use in a transplant. Of course, let's hope that a transplant will not…
As usual, Linda has given a great place to begin your journey with this little boy. I think another route you can take is to talk with parents of children who have been treated with steroids.The doctors talking to each other is not going to give you…
Profile Information
- Birthday
- September 28
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or a researcher with an interest in aHUS issues?
- Yes
- My child ( or myself as a patient) is best described as:
- Interested in Undergoing Genetic Testing
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
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
DNA could not extracted from blood samples
I had sent my blood samples to the Mario Negri Institute in Bergamo, Italy for genetic testing. They could do only the ADAMTS13 gene and for the rest of the tests, they got back saying that the DNA could not be extracted!
I have no idea why. I am really disappointed because I sent the samples in March this year and have been waiting anxiously for the results. The results would have helped me decide about a second transplant (first transplant Nov 1998 - HUS recurrence). A lot
… Continue Posted on August 31, 2010 at 4:25am — 3 Comments
New drug patented that targets Factor H mutations
Posted on August 25, 2010 at 10:21am — 3 Comments
My story
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… Continue
Posted on February 10, 2010 at 9:16am — 14 Comments
Comment Wall (9 comments)
- At 2:19pm on August 25, 2010,
Joy Lewis said…
- Thanks, Kamal!
- At 11:01am on March 16, 2010,
Joy Lewis 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 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.
- At 8:02pm on February 19, 2010,
Grace said…
- Hi Kamal, I did have a recurrence of HUS, sorry that wasn't clear. It took about three months to kill my third kidney and work itself to exhaustion. I am hoping to get another transplant. I'm listed at the center close to where I currently live, and am trying to re-list at the center I had my first transplant, near where my parents live. They want more medical records and genetic tests before they'll put me on the active list again.
You write very well about your experiences. I'm sure you are an inspiration to many people!
- At 9:27pm on February 18, 2010,
Kamal D Shah said…
- Hi Grace, thanks! Good to know that there is another adult here. Are you planning to try another transplant? Why did you have to go back on dialysis? Was it HUS recurrence or something else?
I am seriously considering another transplant. I am trying to find out all I can. I am in the process of sending my blood samples for genetic testing.
Thanks
Kamal
- At 8:02pm on February 18, 2010,
- Hi Kamal, and a belated welcome. I'm another adult patient, first diagnosed with HUS at the age of 19. I wrote a little about it in my profile. I look forward to checking out your blog.
- At 2:45pm on February 8, 2010,
Linda Burke said… - Welcome to the interactive website of The Foundation for Children with Atypical HUS, where we share information, inspiration, and insight into this rare disease. Your profile notes that you have a medical or research link, as well as having a friend or family member with aHUS. We look forward to hearing your story....
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!
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 "About aHUS" tab 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 2010 genetic testing and treatment.
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 "About aHUS" tab 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 2010 genetic testing and treatment.
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...
• • • • • • • • • • • •
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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Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com
Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
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Cape Elizabeth, ME 04107
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