The Atypical HUS Foundation

January 2013 Blog Posts (8)

5 Years

5 years ago today I took an 18 mth old Hyde (with 3 yr old Ruth in tow) to the dr. for what I thought was a UTI.  We were sent directly to the hospital and so began our nightmare known as AHUS.  It's weird that we have such a line in the sand day.  Realistically Hyde had stuff going on for probably 6 mths or so before then - but until this day 5 yrs ago - we were 'normal'.  I would do ANYTHING to take away this whole experience and all Hyde has had to suffer.  But since that's not going to…

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Added by Phyllis Ann Talbot on January 28, 2013 at 10:11am — 2 Comments

Low Hemoglobin

Isla is having a hard time building her Heme levels up.  She had a couple of lapses of HUS in December but even before then she has ot been able to keep her Heme levels normal.  Hers seem to go up and down from the 7s to the low 9s.  Her ped neph is getting concerned with her inablility to build up her levels to normal levels.  All other levels are good right now except the heme.  Has anyone else had this problem and if so how is it being treated.  As always, any information is greatly…

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Added by Dustin G. Wiggins on January 22, 2013 at 6:09pm — 9 Comments

Chloe's Solaris

Chloe has been receiving Solaris treatment for almost two months now and it hasn't changed any numbers I didn't notice any change in her energy level and I was saddened at the thought that it might not be working, and today Chloe had treatment and labs and her haptaglobin was at 104 it normally sits at 30 to 40 Chloe today was in normal range my heart is leaping with joy as I think that finally it is an answer to our prayers Chloe isn't hemolyzing that is awesome :) also Chloe was taking a… Continue

Added by lisa ann peterson on January 21, 2013 at 10:01pm — 5 Comments

rocks in the bladder or something else?

So you know Nathan had passed a very large kidney stone and ultra sound had found two more.  Today they did a follow up on those two and found something roughly the same size as the two stones together, perfectly round in the bladder.  They are not sure what it is, as now it looks like there may be blood flow to the mystery globe.  

Our wonderful urinologist just passed away, and they have not found a replacement yet, but his student has moved to another area hospital which is trying…

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Added by Cheryl Biermann on January 15, 2013 at 4:45pm — 9 Comments

New to aHus / info / Concerns

Our daughter, Phoebe, 7 years old, was diagnosed with aHUS on Thanksgiving weekend 2012.  On Thanksgiving, our very healthy daughter woke up vomiting.  We assumed she had a stomach virus.  By Sunday, we knew she wasn't o.k.  She was pale and had slightly yellow eyes.  She was extremely lethargic and was still vomiting. 

Her original numbers from day 1 at the hospital were:

11/25/12

hgb = 5.5

platelets = 12

creatinine = 2.39

BUN = 154

LDH =…

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Added by Brett Lettiere on January 10, 2013 at 11:30pm — 11 Comments

aHUS Regional Meetings in Atlanta and New Jersey!

We are pleased to share details of two aHUS Regional Meetings planned by NORD.  Patients and their families are encouraged to take advantage of the opportunity to learn, share, and discuss aHUS issues.  Information below is provided by NORD, and will be posted in this site's EVENTS Forum for comments by aHUS website members.

The National Organization for Rare  Disorders is dedicated to helping the…

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Added by Linda Burke on January 7, 2013 at 11:00pm — 2 Comments

Almost 20 years...waiting for science

What a way to begin the year! Today was a miracle for my son Jonathan. He has been waiting almost 20 years for today.....for science to come along and help him battle his disease, A-Typical Hemolytic Uremic Syndrome.…
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Added by Donna Kolp on January 3, 2013 at 10:34pm — 2 Comments

2013 Brings aHUS Regional Meetings for the USA

 

 

     An exciting opportunity has been created for aHUS patients and their families to meet and discuss aHUS issues!  Allie Freitas OF NORD, America’s National Organization for Rare Disorders, today announced 2013 aHUS Regional Meetings for America. The following statments were posted on the Facebook page of The Foundation for Children with Atypical HUS (viewable at …

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Added by Linda Burke on January 3, 2013 at 1:30am — 4 Comments

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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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