The Atypical HUS Foundation

September 2009 Blog Posts (18)

Anna's party and my concerns...

HI, everyone!!!

We just had another busy weekend.

Anna had Make a Wish party, thanks to everyone who came to make this day special!!! I know everyone had fun and blast, specially on GO CARS and Laser Tag!!! Our family and our friends stayed there till they closed, so we got home around 12AM ;-)

We learn something new, that for Anna that was a little too much. She couldn't do anything on following day, stayed pretty much in her bed and she didn't made it to school on Monday. That… Continue

Added by Svetlana Finley on September 29, 2009 at 11:32am — 7 Comments

chloes labs

chloe got labs yesterday and her hemoglobin,hematocrit and red cells and platelets ahve gone down so dr. h upped her epogin. but the good part is her bun and creatnindidnt go up..but chloe in the last 2 days has required a cold so now we are in the watch and wait stage which is the part that i dislike more than anything... chloe also got a black eye from running into a girls cheek at my sister in laws wedding it looks awful. we will go and get more labs on the 7th so hopefully they get better… Continue

Added by lisa ann peterson on September 24, 2009 at 10:40am — 8 Comments

aHUS CONFERENCE AGENDA for Oct. 17th at the U of Iowa


The Foundation for Children with Atypical HUS is happy to provide the link below to our agenda for the Oct. 17th conference at the University of Iowa's MORL research lab. The conference begins with a welcome dinner the evening of Oct. 16th as we finally meet other aHUS familes in person, giving us a chance to chatter informally before a full day of informational events (click on the agenda link for details). After listening to the Oct. 17th presentations,… Continue

Added by Linda Burke on September 24, 2009 at 12:00am — No Comments

Tomarrow evan turns 1 year time flies..well since we have been home evan has been doing great..the last day he had his plasmaphoresis was monday sept 14th..he has never went this long withou…

Tomarrow evan turns 1 year time flies..well since we have been home evan has been doing great..the last day he had his plasmaphoresis was monday sept 14th..he has never went this long without so proud of him..all of his labs have been within normal limits..and off to hospital tomarrow for more bloodwork and to see if he needs phoresis or if he can make it another few days without..fingers crossed Continue

Added by Cassie on September 23, 2009 at 10:42pm — 8 Comments

Dialysis, what a drag, school is so much more exciting than this

Well, I sit here 3 days a week; Monday, Wednesday, Friday getting hooked up to this big monstrous machine, and somehow there is nothing different about it.....always the same, needles in, needles out, holding, cramps....everything is the same. School, now that's the place I enjoy being.....taking radiographs, witnessing a neuter of a cat, getting blood samples, performing urinalysis.....and the list goes on. Don't get me wrong, school is not always fun with all the memorizing, and the papers to… Continue

Added by Jessica Olivia Frysz on September 23, 2009 at 7:11pm — 4 Comments

About Ania

Anna was diagnosed as atypical, recurrent hemolytic uraemic syndrome (HUS) at the age of 2. She had four episodes of atypical HUS over a year from the age of 18 months. She was on daily plasma infusions during acute episodes. After the 4th episode prophylactic FFP therapy was started. Since then She takes FFP once-weekly. If She catches any infections, and her lab tests are getting worst, plasma infusions are more often (about three-times weekly for a week or so). When She was 2,5 years old,… Continue

Added by Zofia on September 22, 2009 at 3:00pm — 11 Comments

Today's Clinic

Figured I'd keep posting here what I update on our carepages - apologize to all that see this twice ;-).

Hi everyone - whew - we made it home from clinic today but are close to building an ark here in GA. Yikes - took about 2 1/2 hours to get down to Egleston and it's only about 40 miles - thank goodness for DVD players!!!! Good news is that Hyde was so excited to get out of the car he didn't repeat last mths fit. Kept saying 'are we almost to the dr's mommy?" I guess you just never… Continue

Added by Phyllis Ann Talbot on September 21, 2009 at 5:14pm — 4 Comments

Anna and her NIKE shoe

We had awesome evening relieving kids shoe and watching auction ;-) Anna designed 3 pair shoes, but at the store's for sale will be only one with bright colors ;-) Anna's first shoe sold for $6,500 The other 2 pair went for $7,000 and $11,000. They also auctioned posters made out of fabrics, that used on their shoes. We had a lots of fun. Total they raised over $100,000 for our Doernbecher children hospital.…


Added by Svetlana Finley on September 20, 2009 at 6:18pm — 4 Comments

Update on Anna

Anna is been doing great.

Her labs are staying almost the same, so we will try to do her treatments every 3 weeks. Only concern they have right now that her Iron level is dropping again. We going up on her iron supplements and if in 3 weeks her iron won't go up, then she will be receiving IV Iron. Other thing is her HCT going down very slooooow, that might cause by having low Iron.

Does any other kids have iron problems?

Tomorrow is Anna's big day, she will be showing her new… Continue

Added by Svetlana Finley on September 18, 2009 at 3:12pm — 6 Comments

update for lil miss chloe

good morning all lil miss turned five yesterday. the big five she is now officially a big girl. chloe had labs drawn on wed of this week and they are not where i would like them to be she has been doing very good for four months but as we know with ahus kiddos that changes on a regular basis. her hemoglobin and hematocrit are dropping and her bun and creatnin are creeping up also she is starting to get stomach pain again. so as of this moment right now i dont think iam going to go to the… Continue

Added by lisa ann peterson on September 18, 2009 at 1:16pm — 4 Comments

an update on evan....all his labs have been great!!! he was discharged from the hospital on tuesday sept 15th..yay..finally starting to get settled in after a long 8 weeks of hospitalization..he is s…

an update on evan....all his labs have been great!!! he was discharged from the hospital on tuesday sept 15th..yay..finally starting to get settled in after a long 8 weeks of hospitalization..he is still down to 2 times for phoresis..right now we are going to woman and childrens hospital in buffalo, ny for his phoresis treatments..monday was his last treatment far hasnt needed it..we went today and labs looked great..tomarrow he goes back to get labs checked again to see if he needs… Continue

Added by Cassie on September 17, 2009 at 9:20pm — 4 Comments

Making the Most of an Opportunity

Today was one of those glorious autumn days in Maine, warm breezes ruffling the leaves and wafting away every good intention I had to multi-task and annihilate my "To Do" list! I've partly completed my "Care Packages" for some great neighbors who are off to their college dorms and the back perennial bed is freshly weeded but its mulch remains in a pile by the deck. Instead I chose to have a cup of tea and watch Brad and Skyler tumble about near the field, as I just relaxed and let my mind… Continue

Added by Linda Burke on September 15, 2009 at 11:41pm — 1 Comment

Fingers Crossed

Yesterday we had Brody's hematologist appointment; it had been 21 days since his last ffp infusion. Their plan was to draw labs too see where Brody was at. If labs didn't look good then they would do the infusion but if they were stable they would wait.

Well his labs looked great! His red blood cells were up to 4.45, hemoglobin 11.8, hematocrit 35.5 and platelets 308. The only lab that was down that I am a little worried about is his reticulocyte count. It's still in the normal range but… Continue

Added by Amy Swarbrick on September 12, 2009 at 11:00pm — 7 Comments

Jonathan's first weeks of School :)

Hi all!!

First I wanted to say that we pray for all the children who are suffering with aHUS, and we also pray that as parents, we are guided in the right direction as it is difficult making so many hard decisions regarding our children and their care.

With that said, Jonathan has started a venture of several different things. First he started Hemodialysis on August 3rd, and is doing extremely well. His labs look great, as well as he looks great! He feel so much better, and has… Continue

Added by Donna Kolp on September 11, 2009 at 9:12pm — 9 Comments

Anna's and kids first wekk of school

It is been great school week.

Anna is in middle school and loves it. First two day's it was a little frustrated with the school bus, because or they came to early or they run late. For last two days it been no problems with them. Other thing it's for Anna try to adjust to her school schedule, last year she barely made it to school maybe 2 day's a week and this year are plan to miss one day a week ;-) She likes most of her teachers, except having trouble with language arts. Anna saying she… Continue

Added by Svetlana Finley on September 11, 2009 at 4:36pm — 2 Comments

my son evan is a very active 11 month old who is currently having plasmapheresis 3 times a week. this week they are trying to wean him off of it and get him down to 2 times. so far this week he had i…

my son evan is a very active 11 month old who is currently having plasmapheresis 3 times a week. this week they are trying to wean him off of it and get him down to 2 times. so far this week he had it tuesday and will have it friday. his daily labs are keeping steady. we have been in the hospital for the last 7 weeks now. the drs allow evan to actually leave the hospital now so that myself and his dad can take him for walks or even go places for a few hours. in couple weeks is his first… Continue

Added by Cassie on September 11, 2009 at 12:00am — 10 Comments

update to an update

so we drew some labs and chloe looks pretty good on paper.. dr. h told us to wait till tuesday and we might head to spokane to see him earlier just to recheck.. i dont understand why shelooks good on paper but she is a little puffy and her blood pressure is higher we are just going to have to wait and see.. i will definetly bewatching her closely over the weekend... hope everyone has a safe weekend... fall is on its way its cold in washington today

Added by lisa ann peterson on September 5, 2009 at 2:26pm — 4 Comments

an update

so lil miss hung in there for my wedding and she looked beautiful she looked like a princess. but now she starting to swell up she has gained 3 lbs in the last couple days and her blood pressure is 133/67 iam getting a little worried cause it will b 4 months without plasma in 2 weeks and that is the longest she went before. i feel sick to my stomach thinking about ahus today i dont like that i cant make her better and i cant make this go away that is supposed to b my job as a mom iam supposed… Continue

Added by lisa ann peterson on September 5, 2009 at 12:55am — 4 Comments

Monthly Archives











To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from

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.
• • • • • • • • • • • •
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



© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service