The Atypical HUS Foundation

March 2011 Blog Posts (14)

Update on Ben Aguallo...

Hello again.... We wanted to take some time to update the aHUS family about Ben Aguallo....

 

Beth and I can still remember sitting in the patient room at Ben's Pediatrician's office looking at Ben and wondering what could be causing him to look so pale and be so sick.  Normally I do not go to doctor's visits.  Most of the time the Dr. prescribes an antibiotic and the kids get better.  However, something did not feel right about this situation, and I wanted to be there with…

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Added by Jonathan Aguallo on March 29, 2011 at 5:30pm — 4 Comments

six months update

 

Jose has a kidney since six months ago with Soliis . He is happy  his clinicals labs are good, only a little  problem with the high blood preasure in the night. . Now I am waiting for the results from USA to change the time to Soliris dosis each 21 days , Now is doing from 15 days ( 600 mg ). He has not any secundary effect .

 

 

 

 

 

Added by maria vicenta carratala rios on March 25, 2011 at 6:12pm — 1 Comment

Hi everyone - I've got to get in a little better routine on updating - think I may start updating just on clinic/Soliris days which as of now will be every two weeks. I know some of you get nervous i…

Hi everyone - I've got to get in a little better routine on updating - think I may start updating just on clinic/Soliris days which as of now will be every two weeks. I know some of you get nervous if we go too far between updates! First all the good news - we are moving to once a week labs and every other week clinics as of now - woo hoo - we had thought we had 2 more weeks of twice a week trips to Egleston so this makes Mommy very happy! Also - Hyde's creatinine is…

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Added by Phyllis Ann Talbot on March 25, 2011 at 8:42am — 1 Comment

Brody

I don't post much but I always check in to read others updates and always keep these kiddos in our prayers. Brody will be 3 years old on April 2nd! We are so excited and feel so blessed. He keeps us very busy and is a non-stop chatter box. Literally it is hard to get a word in when he is around and it is impossible to argue with him because he will never give in (I'm sure he didn't get that from me;).

It's hard to imagine life with him sick again but it's always a constant worry in…

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Added by Amy Swarbrick on March 22, 2011 at 1:27am — 8 Comments

Chloe

Well lil miss went to the doctor today and the neuro doc said that we are going to keep a diary of her headaches and doc Hernandez is going to change blood pressure meds to see if her headaches get better. She is also getting another MRI to check her lower spine to see if that's what's causing her incontinence there is also alot of other tests they are going to run to see if they can figure out why she is having those migraines and they also don't think it's the Chari one malformation. Also she… Continue

Added by lisa ann peterson on March 22, 2011 at 12:17am — 4 Comments

Interested in a USA Conference for aHUS families ?

  We welcome the proposed opportunity for aHUS patients, parents, and aHUS physicians/researchers to meet at the University of Iowa sometime this fall.  The University of Iowa has a highly accredited lab with expertise in aHUS genetic screening, and they successfully pioneered the first American aHUS renal transplant with planned Soliris therapy. The following is a message from Bill and Cheryl Biermann, founders of The Foundation for Children with Atypical… Continue

Added by Linda Burke on March 17, 2011 at 11:00pm — 8 Comments

OK - OK - I took the hint ;-)

SO sorry for not updating after Hyde's stent removal - I got the hint Linda and Cheryl ;-).  I did update our carepage but feel bad taking over the blog posts on here.....basically everything went well - it was VERY weird being there for an outpatient surgery - we were totally lost on stuff and we practically LIVE at the hospital.  Anyway - went great and we were back home by early afternoon.  He had some pain and we were a little on edge b/c of the bloody urine for a few days - but just got… Continue

Added by Phyllis Ann Talbot on March 17, 2011 at 3:29pm — 1 Comment

7000 Bracelets of Hope - a CRDN Initiative

With thanks to Nicole Boice and all volunteers of the Children's Rare Disease Network at http://www.crdnetwork.org/ :
Global Genes Project E-News:

It’s a Wrap – Rare Disease Day 2011.

DANA POINT, Calif. – The 4th Annual World Rare Disease Day took…

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Added by Linda Burke on March 15, 2011 at 1:30pm — No Comments

Hi everyone - sorry for the lack of updates last week! No news is good news. I also have to apologize for my typing/spelling in the last updates - I did them from our ipad and even though I love it -…

Hi everyone - sorry for the lack of updates last week! No news is good news. I also have to apologize for my typing/spelling in the last updates - I did them from our ipad and even though I love it - the keyboard's just not the same -(. Hyde's been doing pretty well and rocking along - he did get a nasty sore throat last week and we had our first visit to the pediatrician's post-transplant (have I mentioned that I LOVE our pediatricians?) Anyway - his throat was ucky…

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Added by Phyllis Ann Talbot on March 14, 2011 at 6:56am — 2 Comments

Riley's progress

Just thought I'd give you an update on Riley. He is now 3 and a half months post liver kidney transplant. He is doing absolutely brilliantly. Both organs are amazing and he is on the lowest tacrolimus level just 0.5mg twice a day!!

He returned to school 3 weeks ago and is loving it. I will go back to work next week. I actually can't wait after 3 months off. Bet I change my mind after the 1st day back in with a load of cocky high school kids ha.

It's like Riley has had a…

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Added by Stacey on March 12, 2011 at 3:29pm — 4 Comments

New Board Members - Congratulations

Everyone,

 

The Foundation for Children with Atypical HUS is pleased to announce the addtion of two board members:  Linda Burke and Phyllis Talbot.   I know you are all familiar with their hard work and dedication.  

 

I think our organizaton will be strengthened by addiing two parents who are deeply involved with the Foundations Mission.  They will be replacing  Helen Greaves and Fred Biermann.   Helen was the catylyst behind the initial Atypical HUS fundraisers…

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Added by Bill Biermann on March 10, 2011 at 3:13pm — 3 Comments

Joy for our friends

Today, we pray for a long-time friend who it seems may finally have a kidney which meets his specific needs.  He has had two near misses this year alone and we are praying this time is a good match and the anitbodies cooperate.  Being a teen, he has been with us for a long tme, and like us has rejoiced when one of the other children were transplanted,overall he and Nathan seem to accept the ebb and flow of their friends and not dwell on "Why not me?"

 

When their friends are…

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Added by Cheryl Biermann on March 8, 2011 at 9:27am — 1 Comment

Lil miss Chloe P

Ok guys Iam a little raw when I explain this.. We hot Chloes MRI results back from ties and it seems that she has a borderline chiari one malformation It might explain more than we thought like peeing pants headaches leg and arm pain vision problems and vomiting at random.. I don't know much from here except that we are hopefully going to hear from the nerosurgeon today to find out what the next step is.. All I keep wondering is " really" Ian normally the woman who has a list of questions for… Continue

Added by lisa ann peterson on March 3, 2011 at 9:14am — 10 Comments

Dr Goodship announces 1st aHUS Patient-Family Conference in UK

The work of Dr. Tim Goodship, whose leadership in aHUS research has added clarity to the complex issues associated with this ultra rare disorder, has just informed us that he is organizing  the FIRST conference for atypical HUS patients and their families in the UK. 

 

Dr. Goodship announced:  "On Saturday 11th June 2011 we will be holding the first UK aHUS patient-family conference in Newcastle upon Tyne. Preliminary information about the conference is…

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Added by Linda Burke on March 1, 2011 at 2:30pm — 7 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 info@atypicalhus.org

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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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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 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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