The Atypical HUS Foundation

December 2010 Blog Posts (17)

2011

Happy New Year 2011 from France and this…

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Added by Nicolas on December 31, 2010 at 7:10pm — 1 Comment

An end of the old era and an exciting new beginning

Hello everyone,

 

Bill and I just wanted to thank everyone for the wonderful participation in this web-site and also to thank all who have so faithfully served the foundation for many years as well as those of you who are getting involved now, fund-raising or taking calls from new parents or getting on-line with your experiences and sharing your knowledge.  All of these activities have made our community both stronger and healthier.

 

With the old year closing out…

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Added by Cheryl Biermann on December 30, 2010 at 2:32pm — 3 Comments

OK - so I lied

Wow - really intended to wait until our next clinic to post another update - even through extreme duress and tons of stuff going on - but I finally broke!



I'll start with some big ups and downs we had early in December on Warren's 'final' testing to be Hyde's donor - let's just say we are kind of back in a holding pattern - with the possibility of moving forward quickly in January (or starting back and square one looking for non-related donors).  How's that for clarity?  Yeah - us… Continue

Added by Phyllis Ann Talbot on December 29, 2010 at 2:47pm — 4 Comments

Merry Christmas

Hi all, i just wanted to say a huge merry christmas to all the aHUS community and hope that you are all doing well at this time of year so you can enjoy a wondeful day!!!

 

I want to thank everyone here for becoming a part of my life and for being there for me when i need advise or a listening, understanding ear... it has been invaluable to me on my journey and has provided me with so much strength at times when i have been feeling low!!!

 

Again a hope you all…

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Added by Kerri Grey on December 22, 2010 at 8:51pm — 3 Comments

Merry Christmas

Hello

Tomorrow, the Alps for a ski week…

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Added by Nicolas on December 18, 2010 at 6:14am — 2 Comments

Riley's success

Hi all. I just thought I would let you all know that after much deliberation and medical advice I decided to opt for the Liver/Kidney transplant for my son Riley. This was for many different reasons and now it seems I made the best choice.

On 17th August Riley was enlisted for transplant. On 1st October we had our first dreaded call. It was horrible, getting to the hospital, having dialysis and plasma exchange and being prepared for theatre. Everything was rushed and I was beginning…

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Added by Stacey on December 16, 2010 at 5:17pm — 8 Comments

Christmas time is here....

I know I haven't been on this site in a long time, but I've been busy like a crazy bumblebee trying to get all of my work done, before the Christmas holiday begins. I've now officially finished my fall semester and look foward to seeing my spring semester in full swing :)  I have gotten word on my transplant situation and I have YET to be listed STILL. I found out at the last minute that I am going to have to have a liver biopsy, due to the fact that I have been diagnosed with level 3…

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Added by Jessica Olivia Frysz on December 16, 2010 at 4:48pm — 4 Comments

God Is Good :)

Hello all,

This post is a much better one that the last.......

Jonathan had his Bilateral Nephrectomy done last Monday. What was to be a 3-4 hr. surgery, turned into a 7 hr. surgery. Jonathan had alot of scarring and adhesions on his right side due to all the years he was on PD. It took the team almost 5 hrs. just to remove the right kidney. The biopsy came back and NO CANCER!!!!! I was afraid Jonathan would think it was all for nothing, but then he said to me that he…

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Added by Donna Kolp on December 14, 2010 at 10:30pm — 5 Comments

Good afternoon members. Jose has no catheter, nor has the dual jack, and he will go to the hospital every 15 days for treatment with Soliris. This Christmas will be very very very special in our home…

Good afternoon members. Jose has no catheter, nor has the dual jack, and he will go to the hospital every 15 days for treatment with Soliris.

This Christmas will be very very very special in our home, it will erase the shadow of pain that my heart when he had both kidneys removed 20 on December , 2006 and…

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Added by maria vicenta carratala rios on December 12, 2010 at 2:11pm — 4 Comments

Christmas is coming.

Coen, almost 8, is very excited for Christmas. He is counting down! We are busy planning for our annual Christmas Eve party--which entails lots of food, tons of people, free-flowing wine, rockband on wii--and always a very special visit from Santa. As I think about it, it is funny how traditions come about.

It was December 15, 7 years ago, when Coen was rushed to the hospital and diagnosed with aHUS. I always remember the date because I remember being totally ignorant and…

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Added by Jodi Kayler on December 12, 2010 at 12:12am — 3 Comments

Update on Maya,

I didn't write for a long long time as there is never enough time for anything anymore but felt I need to update you on what is happening with us. I feel a little bit like Donna. Maya was stable and well on peritoneal dialysis for a long time. We've been waiting for Soliris study to start in the UK impatiently and only recently we've learnt that it is due to start very very soon. We could then go on the waiting list stright away and wait as none of us can be a live donor. But of course it…

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Added by Sylwia Antkowiak on December 11, 2010 at 2:07pm — 4 Comments

Weekly plasma exchange.

Hello, I hope everyone is having a blessed holiday season. I was wondering if there is anyone that is doing weekly plasma exchange and if you have been doing it for a while. If so can you tell me how that is working out for you? Thank you and blessings to you all.

Added by Destiny Floyd-Rakes on December 10, 2010 at 1:16pm — 11 Comments

Support

As this year quickly approaches its final days I think of the support our Foundation families and our immediate families have provided and I thank you. Support comes in all forms from a simple email, hug, or call, to keeping us company when our children are in the hospital. We appreciate the insight we've gained from the Foundation and would now like to return the support. We are hosting a raffle fundraiser (posted on the Events page) with a quick turn around as the prize will make an…

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Added by Crystal Ferreira on December 10, 2010 at 12:49pm — 1 Comment

Strep Throat and aHUS?

Hello! My son, Kaleb, was just diagnosed with strep throat today and just to be safe, based on our past experience with aHUS, our pediatrician ran a urinalysis. It tested positive for some small amounts protein and blood. I read a little bit about the affects of strep throat on the kidneys and apparently this can be common and usually resolves itself. Could this affect a child with aHUS differently? I was just wondering if anyone else has had an experience with their child who has had aHUS and… Continue

Added by Kortnee Fornetti on December 7, 2010 at 10:40pm — 6 Comments

iGive.com

I just wanted to say that shopping through the iGive is such a wonderful way to not only contribute to the aHUS foundation but also to raise awareness. I prefer to do the majority of my Christmas shopping online, and with all of the stores that will contribute a percentage of your purchase to aHUS foundation, it makes shopping through this site a breeze!

Added by Sharon Madrid on December 7, 2010 at 4:17pm — No Comments

Bilateral Nephrectomy

I don't even know where to start....

Last saturday, after dialysis, Jonathan started to experience lower back pain. As the evening progressed, so did the pain. We ended up taking in to Children's Medical Center in Plano. Jonathan was in so much pain. After ultrasounds, and lab work, they decided to transport him to Children's in Dallas. His Dr.'s could NOT find the source of his pain. They decided to do CT scan. They found a small tumor on his right kidney that back in April was fluid…

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Added by Donna Kolp on December 3, 2010 at 3:32pm — 12 Comments

I thought an update on Nathan's transplant would be in order; we are continuing to get blood work, have already completed his immunizations, and done an ultra-sound...next up is an echo, which we exp…

I thought an update on Nathan's transplant would be in order; we are continuing to get blood work, have already completed his immunizations, and done an ultra-sound...next up is an echo, which we expect to be good as his blood pressures have been extremely stable since being on hemo.

We are expecting things to culminate in a transplant by the end of March or early in April. I will be his donor.

One of the surprises is that after everything he has been through…

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Added by Cheryl Biermann on December 1, 2010 at 11:47am — 10 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.
  
• • • • • • • • • • • •
  
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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