The Atypical HUS Foundation

June 2012 Blog Posts (9)

Kasey - update from New Zealand

My daughter Kasey has recently turned 22. She has been on dialysis now since age 15yrs - had a failed kidney transplant at 17yrs. She had been on haemodialysis since first getting sick but because of a number of problems and infections has almost run out of access sites. Last week she got started on peritineal dialysis instead and for the most part is enjoying the freedom of not spending 3 afternoons a week in the hospital. Her dad and I have both been and had cross matches done looking…

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Added by Sharon Walker on June 26, 2012 at 5:23am — 3 Comments

Ben and his first dose of Soliris!

...we wanted to provide an update on Ben post his first infusion of Soliris. Approximately, 96 hours post his first infusion platelets rose to 288 vs a pre Soliris baseline of ~170 - 190 (38%) and LDH dropped to 175 from a baseline of ~180 - 200 (11%).



We realize this is just the first dose, and one set of labs does not make a trend; however, we really haven't seen platelets that high in 2 years.



We will continue to monitor side effects. Ben was in the midst of a stomach… Continue

Added by Jonathan Aguallo on June 26, 2012 at 12:40am — 1 Comment

Update on Ben Aguallo - The Journey takes a new path...

...Well.... looks like Ben is in the process of starting a relapse.  While at Victory Junction Camp this past week, Ben was stricken with a stomach virus, where he vomitted and lost his appetite.  On Friday, we picked Ben from camp, and headed straight to Levine Children's Hospital to run labs.  The lab results were not bad:  HGB 13.5 (a little high due to dehyrdation), Platelets:  168, LDH: 190, Creatine .8.  Blood Pressures were very very good as well 110s / 70s.  With those results, we…

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Added by Jonathan Aguallo on June 18, 2012 at 8:54pm — 5 Comments

2012 EHA Congress- New Soliris Data from Amsterdam

     This weekend the 17th Congress of the European Hematology Association (EHA), was held in Amsterdam  ( June 14-17, 2012).   More than 9.000 participants were expected to attend conference sessions, aimed at the world’s health professionals interested in or working in the field of hematology.  (See the description of the Congress and its…

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Added by Linda Burke on June 18, 2012 at 12:30am — No Comments

Long time no update! And Phyllis and kids drive everywhere ;-)

Hi everyone,

Just realized how long it's been since an update! It's been really busy with end of school year stuff, etc. First for medical stuff - overall Hyde's been doing well - especially on the 'big picture' stuff, we've just have a bad string of luck on 'small stuff'. After the colonoscopy and endoscopy showing colitis and gastritis - hyde has had back to back to back ear infections, strep throat (complete with 104 + fever) and another ear infection -…

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Added by Phyllis Ann Talbot on June 15, 2012 at 4:14pm — 1 Comment

Update on Ryan and Soliris

Ryan has been on Soliris since February and has responded very well.  He gets it every two weeks and blood pressure has eventually settled over the last few weeks, but it took alot of playing around with medications but we are now at the stage over the last 2 weeks where medications have been slightly reduced and blood pressure holding.  When he was in the height of relapse his blood pressure was slow to respond and very high.

His bloods are good however his LDH is still at…

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Added by sabrina kiernan on June 10, 2012 at 7:26pm — 2 Comments

Camp Okewhena

I just dropped Nathan off this morning for his annual trip to Tennessee for kidney camp.  It is a highlight of our summer, both his and ours!  We love him, but boy can we accomplish stuff without the hassle of medical interruptions!  No, seriously, it is such a great way for him to get away for a while with his true peers...not just in age but in the fact that these kids are all on the same page as far as what is their "normal".  For instance, there aren't many "athletes" in the group, but…

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Added by Cheryl Biermann on June 9, 2012 at 11:49am — 1 Comment

Update on Jeremy (FH Auto antibodies)

Hi everyone, wanted to give an update on my brave little man. Since being testing in Jan 2012 revealed he had Factor H Autoantibodies, has has been on immunosuppressants (Azathioprine and prednisolone) with great results. He had his last plasma exchange in Feb and we finally had his Central Line removed on May 3rd, just two days before his 6th birthday. Needless to say he was a very happy boy at his magician themed birthday party where his whole class plus some kindergarten friends attended. In… Continue

Added by Michele Haymes on June 8, 2012 at 7:43pm — 1 Comment

My Daughter Erica's Story

My daughter Erica, age 23 contracted a virus 7/2011.  She ended up in the hospital 8/3/2011 and was diagnosed with TTP.  Erica was in the hospital for 23 days.  She has had close to 100 plasma pheresis treatments during the past year.  She has lost kidney function and is now on peritoneal dialysis.  In Oct 2011, she was told by her nephrologist and hemotologist that she was fine her kidneys came back, blood chemistry looked good ...see you in a month.  8 days later, complete relaspe and back…

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Added by Denise Schmidt on June 8, 2012 at 2:36pm — 2 Comments

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The Atypical HUS Foundation 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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
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