"Hi, my daughter Anna first time got in 2002 and doctor told us if she won't relapse with in 4 years, she won't have it again, but she did had it another episode in 2007 that is 5,5 years later. I will agree with Cheryl it is good to get…"
Newbie's Discussions
Anyone ever experience aHUS and not have it reoccur?
20 Replies
I'm new here and new to aHUS. I have a child who had aHUS but was told by our care providers (who've had experience working with HUS/aHUS patients before) that they don't expect it to reoccur…Continue
Started this discussion. Last reply by Svetlana Finley Aug 7, 2011.
Newbie's Page
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debbie thelwell replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"As parents we do the best we can for our children and hope we have done the right thing, for now i feel we have done the right thing not to tell Josh . I know if he ask's I wont lie but also I will gentle about reality "
Linda Burke replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"Well, I certainly can understand your feelings on this subject. I stubbornly choose to celebrate each healthy day for Skyler and try to enjoy small moments in the life we have fashioned for ourselves since Hunter's death in 2008…"
debbie thelwell replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"we are in the same boat as you, my son doesnt know christ he doesnt need the burden its nearly broken us never mind him. We to dread the day he finds out i went to the Dr's with him only this week and had to do signals to the dr to stop as he…"
debbie thelwell replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"Hi our son had his first and up to now his only episode of HUS in 2008, we found out 2009 he has a MCP gene mutation, I would recommend the genetic testing as it rules it out or prepares you. Because it is such a rare condition the Dr's dont…"
Kelly Crumbaker Hubbard replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"I recently saw that you posted that Josh is not feeling well and has gone back for testing...is he doing ok? My son Kegley has had two exacerbations of AHUS but has been clear for 4 years. I also received genetic testing at a conference in Iowa and…"
debbie thelwell replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?" Its such a nightmare having this black cloud hanging, we live each day as it comes and count our blessings that Josh is well but its not easy. "
Svetlana Finley replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"My daughter Anna had first AHUS in 2002 she had treatments only for 2 month, then next time she had in 2009. That was big shock for our doctors and specially us. No one expected her to get it again, but now we know it can strike anytime."
debbie thelwell replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"thanks Cheryl Josh has the added issue of asperges and adhd to cope with as well, I dont want him to spend his life worring about something that may never happen again.Its bad enough for us how do you cope with the burden of this
"
Cheryl Biermann replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"Hi Debbie,
Me again. y
We had a dry run when our older son broke his neck and wasn't able to do things his siblings were, even now at 20. Our other older son has epilepsy and has had the same issues. We found it very…"
debbie thelwell replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"Hi my son was ill in 2008 we live in fear of reoccurance as he has MCP only this week we have taken him into hospital for bloods as he has been unwell. This has been so stressful we tell him we need to check his kidneys I dread the day he…"
Newbie replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"We saw our regular doctor (not the specialists; they said we were cleared and good to go since they don't expect it to happen again) but he was not familiar with genetic testing. I still want it done because I'm losing my mind with…"
Cheryl Biermann replied to Newbie's discussion Anyone ever experience aHUS and not have it reoccur?"I had forgotten thiis question came up, but another thing to take note of is that having kidneys that are completely shut down or nearly shut down necessitating regular on-going dialysis does prevent many people from having classic relapses. …"
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- March 20
- Do you have a friend or family member diagnosed with aHUS?
- Yes
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Comment Wall (1 comment)
- At 11:50pm on April 15, 2011, Cheryl Biermann said…
+Hi, LC,
Welcome! Please feel free to join any conversations, and if you have not already taken a look at the aHUS bootcamp, it is a great introduction to life with aHUS. Another really cool option is that you may also have private conversations here if you accept a friend request or they accept your request. We look forward to hearing from you.
Cheryl
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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