The Atypical HUS Foundation

October 2012 Blog Posts (15)

Happy Holloween!  celebrating a second chocolate friendly Holloween together with Nathan!  No more trades with his siblings:)   I am not sure about y'all, but unpredictability seems to go hand in had…

Happy Holloween!  celebrating a second chocolate friendly Holloween together with Nathan!  No more trades with his siblings:)  

I am not sure about y'all, but unpredictability seems to go hand in had with Nathan and so yesterday an hour before we were to leave for his eval at the Therapy hospital and while my head was drenched with shampoo, Nathan announced, Mom, I have blood in my urin!  Well, whoo...I went to the bathroom and low and behold I water.  Yes, for the first…


Added by Cheryl Biermann on October 31, 2012 at 6:26pm — 7 Comments

Chloe Peterson

Well it's been a long time and Chloe has been living with Ahus for 4 1/2 years now. She's been through ups downs and scary unknown inbetweens. Well on wed Chloe had a biopsy to to help us determine what our next path is. Chloe has a factor H mutation for those that don't know and we have been walking on eggshells since 2008. Chloe will hopefully start Solaris within the next week or two. Chloe has been in a lot of pain since the biopsy they took three peices for study and they are looking to… Continue

Added by lisa ann peterson on October 29, 2012 at 9:30am — 3 Comments

Soliris is our Halloween treat!

Leaving early Wednesday morning for Iowa for my daughter Anna's first Soliris treatment, transplant will follow on Nov. 8th. We are all very excited (nervous) and ready for the next step of her eight year battle against aHUS. After 6 1/2 years of home hemo dialyisis six days a week she is down to single digits of remaining treatments!

Added by Selma Bennett on October 29, 2012 at 8:20am — 4 Comments

aHUS Advocacy - Capture Opportunities


     The one good thing about aHUS has been that by necessity I’ve become more aware and appreciative of the little things in life.  I’ve become more flexible in my attitudes, plans, and actions, too.  Oh wait, I guess that’s more than one good thing – which is rather my point.


     The saying, “We can’t control the wind, but we can adjust our sails.” rings true especially for those dealing with a diagnosis of aHUS.  For those of you with young children, it’s second…


Added by Linda Burke on October 24, 2012 at 12:00am — 1 Comment

NORD and DIA Host Conference - Oct. 22-24th

NORD and DIA Host Conference on Rare Diseases and Orphan Products…


Added by Linda Burke on October 23, 2012 at 1:00pm — No Comments

Soliris unavailable in New Zealand

My daughter Kasey continues to have a rough time coping with her dialysis and the many things which seem to go wrong for her. She went on peritineal dialysis at the beginning of the year which is going okay except for getting lots of pain. Doctors have now decided they did a crap job putting in cathether and that they may redo it so it is better place. Also, we have been hoping Soliris may be an option for another transplant but her main renal doctor this week confirmed it was not an option…


Added by Sharon Walker on October 21, 2012 at 3:30am — 10 Comments

Still Low platelets

Hi Everyone,

     Just hoping for any input you all may have.   My son, 21, presented 9/28 for the first time.  Dr's thankfully responded quickly with plasma exchange and dialysis and even started Soliris within 72 hours!  His lowest platelets were 14,000.  within 24 hrs. of the first Soliris he was at 42,000 and at 95 or 98,000 in 3 days.  We are about to get his 4th…


Added by Barbara Farcher on October 19, 2012 at 3:57pm — 11 Comments

Platelet Drop while on Soliris

Erica has been on Soliris since Feb and has never missed a dose.  Her labs from 10/4 came back and both her Haptaglobin and Platelets have dropped.  This is the first time we have seen that since starting Soliris.  The haptaglobin dropped to 35 and platelets to 113.  Blood was tested again, hapt stayed the same and platelets went up to 134.  Has anyone seen this happen while taking Soliris?  It has me scared to death.  She is having labs done again, today.  So I keep praying this is some…


Added by Denise Schmidt on October 16, 2012 at 7:49am — 15 Comments

Introduction, Symptoms, and Diagnosis (Part 3)

      The trip to OSU was pretty uneventful.  When I arrived, I had several labs drawn, and my dad and siblings arrived at the hospital.  It was so nice of them to drive 2 hours and spend a Saturday with me sitting in a tiny hospital room.  It provided a sense of normalcy and distraction to my situation and it was exactly what I needed and I was so thankful for that.

    OSU is a teaching hospital and that day, I shared my story with several doctors, attendees, and students. I felt…


Added by Jennifer Christopher on October 12, 2012 at 11:09am — 5 Comments

Introduction, Symptoms, and Diagnosis (Part 2)

     My husband followed the ambulance to St. Rita's and I told my mom that she should go home and get some rest.  By now it was about 10:00 pm and there wasn't much to be done that night.  Upon arriving at St. Rita's I talked to a Dr. and she was thinking that the Cipro (the antibiotic that I was taking for both the diarrhea and the proposed UTI) may be causing all of this.  Whew, I thought, that is great news.  I was imagining all of these little Mexican worms eating up my insides and was…


Added by Jennifer Christopher on October 12, 2012 at 10:16am — No Comments

aHUS in the News



   The Foundation for Children with Atypical HUS will host an informational booth at the fall 2012 conference of the American Society of Nephrology (ASN).  Considered America’s premiere conference for nephrologists and others in related fields of medicine and research,…


Added by Linda Burke on October 12, 2012 at 1:00am — No Comments

How aHUS came into my life

Hi there!

I am a 29 year old German, and I was diagnosed with aHUS in March this year. It's all so still relatively "fresh" with me and I am delighted that there is a community in which you can read and hear about aHUS. Please excuse my english skills!

End of February of this year I was sick for a few days at home and I had to vomit all the time. Physically, I felt it to deteriorate, I felt very "strange", which it turned out was probably the high blood pressure. On the third day,…


Added by Sabrina Bundesmann on October 9, 2012 at 1:10pm — 2 Comments

RareConnect - a Global aHUS Community in 5 Languages

     Rare disease patients can connect globally at RareConnect  (a partnership of EURORDIS and NORD).  Add your family's aHUS story within this network and learn from others diagnosed with aHUS - they've created a specialized community dedicated to atypical hemolytic uremic syndrome!  Shared information and insight into aHUS issues across 5 languages (English, Spanish, French, Italian, and German).  Check out the latest rare disease info at…


Added by Linda Burke on October 9, 2012 at 10:42am — No Comments

Introduction, Symptoms, and Diagnosis (Part 1)

Hello Everyone!  I am so relieved and glad to have found a place online to share my story as well as learn about and hear other peoples' experiences with aHUS. I will try to summarize my story as best as possible. I am still new to this and don't have the formal words and language down, but am learning everyday. :)

First, a little bit about me.  I am a 29 year old female who has been married for 4 years and I have a 1 year old daughter. I work as a high school art teacher.



Added by Jennifer Christopher on October 8, 2012 at 8:00am — 5 Comments

Biopsy update

Sorry everyone!  I've been very late on updating from our last biopsy!  I updated carepages and facebook but left it off here! 

Hi everyone - sorry for the late notice but I just heard back from the transplant folks this afternoon on Hyde's biopsy - basically the same as last time - potential borderline rejection. Soooooo - just enough to keep us on our toes - heaven help we actually relax around here! Booo.....but the good news is that his labs are stable so we'll just wait…


Added by Phyllis Ann Talbot on October 3, 2012 at 3:23pm — 5 Comments

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The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to

Membership is open to patients, family, friends, caregivers research and medical personnel.


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.

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.

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.


NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.


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.
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact with your request and details.


 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at

Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012

For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email



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