The Foundation for Children with Atypical HUS

Does anybody know if AHUS can reccur once your kidneys have already been damaged? My son doesn't seem to have been ill since he 1st went into hospital on June 22nd 2009 (has been on dialysis since). I just dnt know if it would show again and how it would appear as like I said his kidneys have been completely useless for 13 months x

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Comment by Jessica Olivia Frysz on August 19, 2010 at 1:47pm
well... aHUS is quite tricky. It can reccur, only in certain circumstances. For instance, I had Plavix after one of my angioplasties, which by the way should not be given to aHUS patients as I found out the hard way, because it actually causes it to react. So, after having Plavix I had a reaction similar to my aHUS. So, in some instances yes aHUS can reccur, other than that, from what I'm understanding in my experiences with it, it remains dormant. But, everyone is different.
Comment by Stacey on August 3, 2010 at 2:48pm
Hi thankyou for your comment. Yes Riley has been much better on dialysis than he was in the previous months prior to dialysis. He did have peritonitis 3 weeks ago and spent 2 weeks in hospital, only for it not to go away and his PD catheter had to be removed. He is now on haemodialysis 3 times a week and is tolerating it really well. That is the 1st time he has ever had peritonitis in the 13 months of being on dialysis and it only occured when a catheter change was done. It is definitely not a nice infection x
Comment by Cheryl Biermann on August 3, 2010 at 11:49am
Hi Stacy,
As a GENERAL rule, the aHUS goes into silent mode when the kidneys aren't available to attack any longer. However, I know of people who have had aHUS attacks their pancreas and who may also have a different disease called TTP-this is similiar only in that it is blood clotts that go to the brain, however in TTP, the genetics are different. Once when my husband put something on the other web-site about aHUS being dormant unless a new kidney was introduced, he was called by an understandable upset family who had the familial form and had members of their families suffer not only kindey failure but other organs as well. If he haas been symptome free for this long, I would imagine he will remain so, but the warning signs will be again like aHUS, fevers, things not being right, lethargy, funny color to the skin any or all of theses things could indicate it is attacking elsewhere in the body.

In addition, there are co-morbidity issues with renal failure such as high or low blood pressures, seizures, thyroid failure and bone disease...your doctors will address these issues with dietary supplements/meds and dialysis as best they can using lab work to indicate which direction to dictate.

What works in your favor, is tht the kidneys failed sooner rather than later, he will have less vascular damage, less chances that he has had very high fevers which may weaken the brain and heart ect. This is also a GENERAL rule. Unfortunately, there are no absolutes, only reassurances that he will PROBABLY be much better off on dialysis that he was before.

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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.

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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.
  
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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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