The Atypical HUS Foundation

November 2012 Blog Posts (14)

Chloe's first treatment

Chloe's first treatment went well.. She handled everything well. I will post again on Monday when she has her second treatment and see what her labs show

Added by lisa ann peterson on November 29, 2012 at 12:38am — 1 Comment

therapy

Nathan finally began therapy Monday.  For those who don't know, he is receiving PT, OT and speech.  it was amazing, after years of wondering how he could do so well in school, but still we knew, things weren't exactly as they should be, it was such a relief to see these professionals zero in on what has been so elusive to doctors and educators.  So, I encourage you, if something isn't exactly as it should be to have neuro phsyc testing, if it turns out okay, great!  If not, maybe you'll be…

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Added by Cheryl Biermann on November 28, 2012 at 10:07am — 20 Comments

Possible Relapse....

Hello to you all, it has been a while since my last blog post.  Marissa has been doing well until about a month ago, two years in remission this November, and it all seems to be starting again!  I hate being fearful for her.  However I am so thankful for this community website and for Soliris which is what she will most likely be starting depending on the next week of lab results. 

Last month Marissa noticed passing dark urine again, she was put on antibiotics thinking it was a UTI,…

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Added by Sharon Madrid on November 24, 2012 at 6:32pm — 4 Comments

iGive.com Donates to aHUS Efforts

Black Friday shopping on the internet? Planning your vacation, or perhaps doing some online holiday shopping?

      Use www.igive.com as a shopping portal and support aHUS patients and their families by choosing The Foundation for Children with Atypical HUS as your Favortie Cause. 

     …

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Added by Linda Burke on November 22, 2012 at 8:16pm — No Comments

I WISH . . .

There's days I wish I can go back to the person I used to be , No aHUS no Soliris no scars absolutely nothing . My mom makes me feel useless at times because of my sickness, saying I can't work or not letting me go out to hang out with friends. So what am I suppose to think now? Being aHUS was the best thing that ever happened to me? I don't think so. Being referred as a " sick person" isn't a great name. I never chose to get sick at the age of 15 , im still mad that happened to me , I don't…

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Added by Ivette Rios on November 22, 2012 at 12:16pm — 9 Comments

Chloe update

Monday... You know that feeling u get when you've waited for something for five years and all the sudden it happens... I'm not sure whether to be nervousness or happy

Added by lisa ann peterson on November 19, 2012 at 7:46pm — 2 Comments

Birth Control Pills

My daughter, Erica age 23 was taken off of birth control when she was originally diagnosed with TTP.  She has sinced been diagnosed with aHUS and is on Soliris and feeling healthy!  She complains when she gets her period of it being heavy and having terrible night sweats.  She'd like to go back on birth control.  My contact at Alexion could not give me any info, so I'm reaching out to any adult women with aHUS.  Any advice?  Is it ok to use birth control pills now that she is on Soliris? …

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Added by Denise Schmidt on November 19, 2012 at 4:50pm — 1 Comment

update on Anna

Hi :)
It has been a long time since I have posted here.  I just wanted to inform all of You that Anna is doing well. She is having FFP drip twice per month. Her labs results are stable. She is having fun, going to school, exercising etc. like any healthy child of her age. Doctors started to suggest, that She is just growing out from a-HUS, like form too small clothes :) . I hope it is true, and wish all of You here the same :)

Added by Zofia on November 17, 2012 at 1:29pm — 4 Comments

Introduction pt 2.

Sunday was more of the same.  Lots of pain, lots of diarrhea, lots of sleeping.  Monday they have decided to do a scope to see if IBS or Krohn's so we have to get her to drink gatorade with Miralax that night so she is ready to go Tuesday morning.  We are really struggling to get her to drink anything.  It is getting harder and harder to get her to the bathroom as her legs don't seem to want to work.  She is swelling and neurologically something isn't right.  It was a long scary night and…

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Added by Kimberly Tressler on November 13, 2012 at 10:00pm — 6 Comments

Our Introduction to aHUS

Until August of this year I'd never heard of HUS or Atypical HUS. Lily was a happy, bubbly, 11yr old with food allergies as well as environmental allergies that kept us on our toes.  She danced, played violin, did arts and crafts, was excited to take French this year and ready to face the challenge of a new school year. She's always had some minor health concerns and for the last year we'd been trying to figure out why the constant diarrhea, tired easily, couldn't run without becoming…

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Added by Kimberly Tressler on November 13, 2012 at 9:00pm — No Comments

No More Dialysis!

Amazing news, Erica's nephrologist is so happy with her labs and urine output that she is off PD!  Her creatine is 1.2 and BUN is normal and she doubled her urine output from the previous month!  She's been on Soliris since 2/2011 and I had given up hope for kidney recovery.  Now, I guess we watch and wait.  Thanks to all of you who have gone on this journey before us and helped make possible the availabilty of Soliris!!

Added by Denise Schmidt on November 10, 2012 at 7:05am — 4 Comments

Biopsy results

We just got Chloe's results on Monday and well I haven't posted because I haven't decided how to write it so here's what I know. Chloe's Biopsy showed that her Ahus is in fact smoldering and our plan is to start Solaris infusions In two weeks so that's what a biopsy showed for my princess that is technically in clinical remission. Also the biopsy showed another disease c1q nephropathy it is small at this point but we have to now monitor two diseases :( it's been a lot for me to digest and we… Continue

Added by lisa ann peterson on November 9, 2012 at 8:22am — 2 Comments

aHUS Advocacy Panel Meets in Washington

      Following on the heels of some fantastic presentations at the 2nd annual NORD/DIA conference, an aHUS Advocacy Panel met on October 24th, 2012 in Washington DC.  Representatives from Canadian, European, and multiple American rare disease organizations convened a meeting with a variety of people and organizations dedicated to exploring issues affecting atypical HUS patients and their families.  Opening remarks were offered by Stephen C. Groft, Director of the…

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Added by Linda Burke on November 4, 2012 at 10:00pm — 3 Comments

Dr. Tim Goodship Joins aHUS ‘Doc to Doc Directory’

 

     The Foundation for Children with Atypical HUS is pleased to announced that Dr. Tim Goodship has joined our “Doc to Doc Directory’ as a volunteer physician committed to provide information and outreach to medical personnel seeking information about atypical HUS.

     For decades a global leader in various fields of aHUS information and research, Dr. Goodship has authored many articles about haemolytic uremic syndrome and has been an outstanding advocate for…

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Added by Linda Burke on November 1, 2012 at 9:30am — 1 Comment

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IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

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 info@atypicalhus.org

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

WELCOME - JOIN US!

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.


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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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 info@atypicalhus.org 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 www.atypicalhus.org.


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 info@atypicalhus.org

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