Michele Haymes's Discussions
Anti Factor H Antibodies
13 Replies
Hi Everyone, I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year. In January we were told that his condition had been narrowed down to Anti FH…Continue
Started this discussion. Last reply by Svetlana Finley May 9.
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Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"Thanks for update!!! Glad to hear he finally get to swim and play sports. I think that is most awesome feeling for our kids ans us, when they are free from their lines. With Anna we started Soliris, then we will redo her antibodies results in…"
Michele Haymes replied to Michele Haymes's discussion Anti Factor H Antibodies"Hi Everyone! I wanted to give an update on Jeremy. Last week we finally got the perma cath removed from his chest!!! It was almost 8 months to the day that it was put in. We are all so very exited for him and he is very much looking forward to going…"
Cheryl Biermann replied to Michele Haymes's discussion Anti Factor H Antibodies"Svetlana,
Under dialysis, there is a very strict diet, even someone with no appetite like Natan had a hard time, but the nutritionist at the hospital is a great resource. Maybe Anna should see your nutritionist if she goes back on…"
Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"Anna used to take Pred, wile she was on Plasma exchange back in 2010 she didn't like it. We got her off as soon as she be eble too and yesterday I talked to her, she poor tears over and over. Looks lie it will be very tough to make start again,…"
Michele Haymes replied to Michele Haymes's discussion Anti Factor H Antibodies"Hi again,
Jeremy has both medications daily as oral liquids. Not sure how long he will be on these medications. I'm not happy with the Pred, as it has many side effects and Jeremy seems to have many of them. The problem we have is that it…"
Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"Thanks for reply Michele, how offten he recived those medications?"
Michele Haymes replied to Michele Haymes's discussion Anti Factor H Antibodies"Hi Svetlana,
Sorry to hear your Anna has aHUS, but good news that they have now identified the exact sub-type. Nobody else responded with other treatment types aside from Soliris. After learning that my son had the FH Antibodies in January, we…"
Cheryl Biermann replied to Michele Haymes's discussion Anti Factor H Antibodies"See above, I googled this question and it brought me To Alexion. It is useful for anti-bodies. I suspect the reason for wanting to try steroids first is the cost. Please pursue the doctors and encourage them to contact U of I and…"
Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"HI Michele
We just found out that Anna has the antibodies to factor H, my doctor wants us go with immunosuppressants before go with Soliris. Anna has episodes on and off, they were just beet treated with plasma exchange and her last episode was in…"
Cheryl Biermann replied to Michele Haymes's discussion Anti Factor H Antibodies"That's right, I remember Australia hasn't yet approved it. We have a member on this site, Kerri Gray who is in Melbourne. Maybe you would like to speak with her? You can friend request her here and have private…"
Michele Haymes replied to Michele Haymes's discussion Anti Factor H Antibodies"Thanks Cheryl. As you may know, Soliris is not approved in Australia and I understand that the cost to the hospitals for it's use is approx 200k. My Nephrologist is wanting to try Immunosuppressants but has now acknowledged that Soliris is a…"
Michele Haymes commented on Kerri Grey's blog post No Title"Hi Kerri, apologies but I tried to respond to your email introducing yourself, but it appears that my reply email went into the Bermuda triangle of the Internet world. I've just tried to add you as a friend so I can send you messages. Would be…"
Cheryl Biermann replied to Michele Haymes's discussion Anti Factor H Antibodies"I googled the question and according to web sites, Soliris is effective in Factor H antibodies.
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Profile Information
- Birthday
- October 24
- 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.
- Nil
- My child ( or myself as a patient) is best described as:
- Anti-FH-Ab (CFHR1/CFHR3)
Comment Wall (2 comments)
- At 11:52pm on February 4, 2012,
Kerri Grey said… Hi Michele, Linda just told me about you joining this foundation and that you are also from Melbourne!!! I too am from Melbourne and my son Ashley has attended the children's hospital for the past 3 years with aHUS. How long ago was your child diagnosed?? Which nephrologist do you see?? What sort of treatments is your child having??
Cheers Kerri
- At 9:57pm on February 4, 2012,
Linda Burke said… Hi Michele -
Welcome to our aHUS community, we hope you find information and support here. Fellow Aussie Kerry Grey is busy settling her gorgeous new baby Ollie into their family life in Victoria, but her aHUS experiences with son Ash might provide some valuable insights. Feel free to post a blog on our home page to introduce yourself, your interests in aHUS, and questions you might have for others.
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 "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...
• • • • • • • • • • • •
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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