The Atypical HUS Foundation

December 2009 Blog Posts (17)

update in the peterson home

it has been a busy halfa month we have been dealing with 79/49 blood pressures one day then 128/70 the next arrgggghhh... we have now doubled her iron intake in a day because she isnt holding on to it.. we also had a good check up last time and things are mellow in her body.. i really am not sure what to do when its like this so we have been go go go... doing all kinds of fun things because i dont really know when the shoe is going to fall next.. we have also lost a dear friend of ours right… Continue

Added by lisa ann peterson on December 29, 2009 at 10:39pm — 7 Comments

Update

Hi everyone! November and December have turned out to be quite crazy work months so I've been bad about logging on as of late. Finally, I have a week off and am excited having a chance to reconnect and see how everyone on the site has been. I just wanted to give a little update on Coen since I've been so quiet.



Since starting Soliris 10mos ago, Coen has remained in complete remission despite several colds, a flu bug, and mild pneumonia. His Haptoglobin and LDH has been perfectly… Continue

Added by Jodi Kayler on December 28, 2009 at 4:33pm — 7 Comments

Hello

Hi everyone.

My name is Alyssa, and I was diagnosed with aHUS in January of this year. It has been a terrible year, I spent the first three months of it in and out of the hospital, and very very sick. Things are looking better right now (Knock on wood), I usually feel pretty good, other than always being so tired. I am waiting for a kidney transplant, but in the meantime I am going to Iowa for some further genetic testing. I have already done some genetic testing, and they came back with a… Continue

Added by Alyssa Deffenbaugh on December 27, 2009 at 12:50pm — 10 Comments

Lydia's First Blood Drive

So, my beautiful child was watching Oprah one day and saw a show about "giving back" to your community and decided after what she has been thru, She would like to donate blood. She realizes she would not be alive today if people wouldnt have taken time out of their busy lives to do this simple yet life saving act. (Lydia is 10 yrs old)



Obviously this cant fly...but what could is the idea of doing something great with your life/time. We contacted the Red Cross and together decided a… Continue

Added by Lisa Goble on December 25, 2009 at 7:27pm — 2 Comments

still not alot of answers :(

Sorry its taken so long to let everyone know whats been going on. I still dont have clear answers from the childrens hospital, but Matt's Dr here seems to be on top of things with him or at least he is doing something to watch him closely. Matt is doing somewhat better and improving on things that were still not yet back to normal when discharged from the hospital. Last week his hemoglobins were very low, and Matt has caught a cold/virus this past weekend. He seems to be doing alittle better… Continue

Added by Kristina on December 24, 2009 at 1:09am — 5 Comments

Christmas wishes, Happy Holidays to all Atypical HUS families

As I look back, living with this disease has taught me many things, that life is no piece of cake. But, as Christmas approaches, I'm also faced with the great notion that it is because of my family and friends that I have been able to live to the tender age of 21 years old, and still fighting. Now, even though I'm not a child anymore, and am one of the oldest patients on this site, I have come to learn, that I have been able to help several kids cope not just with Atypical HUS, but with renal… Continue

Added by Jessica Olivia Frysz on December 23, 2009 at 12:02pm — No Comments

Question for any of you long term PD folks out there

Me again - I have a question for those of you (think there's a few) that have had their kiddo's on PD for a while - Hyde started PD a little before he turned 2 and he's now 3 1/2 and I'm completely STRESSING about how/when to move him to 'big boy' bed? He does really well with his dialysis and hasn't tried to climb out of his crib yet but he's also looking a little cramped in there. I'm terrified of him being in the big bed and getting up and trying to walk out of the room (or even to the door)… Continue

Added by Phyllis Ann Talbot on December 20, 2009 at 1:52pm — 8 Comments

Just when you think you know everything there is to know about Atypical HUS

Did you know there is a condition which could possibly be brought on by high volumes of receiving blood products or steroids, Ivig, Pregnasone (sp?) that could lead to a condition called Chorea, (sounds like Korea) which is linked to Lupus...



This condition is called Chorea, it is the small jerking movements of the arms and legs which can get worse over time and become twisting movements, children often disguise their jerky movements by scratching or rubbing as if the whole thing was… Continue

Added by Cheryl Biermann on December 17, 2009 at 3:17pm — 8 Comments

Update on Brody Man

So we had a little scare last week when Brody woke up pale one day. He had also been fussy and was a little puffy in the face. We got him in for labs right away and everything was still stable...whew. I was convinced the hus was acting up again. Especially since he has had a cold on and off for almost a month in a half now. I'm glad I was wrong. I guess I just figured if I expected the worst then I wouldn't be devastated when they told me the news. Still you can't be too overly cautious with… Continue

Added by Amy Swarbrick on December 17, 2009 at 3:47am — 9 Comments

Video is uploaded and clinic

Here's my latest carepage update - also has the info I sent out to eveyone about an amazing video that a friend of ours did for the hike we do in April that raises money for the foundation for Children with Atypical HUS (80%) and our local children's hospital (20%) - forward a link to this video out to whoever you can think of - trying to spread the word. We also tried to upload to You Tube but had some problems - so if anyones good at that - send me a note separately - we could use some help… Continue

Added by Phyllis Ann Talbot on December 16, 2009 at 9:09pm — 2 Comments

'Doc to Doc' Registry - Sharing aHUS Expertise

You'll note the addition of a new feature to our Home Page - the 'Doc to Doc' Registry, conceived of the necessity to integrate physicans' aHUS experiences with colleagial consultations that offer clarity and insight. Atypical HUS is such a quirky disorder, with a myriad of complexities that can baffle even the most determined doctors and researchers. Learning from each other's aHUS case histories, physicians draw from others' expertise and experiences via a telephone consult. While they… Continue

Added by Linda Burke on December 14, 2009 at 11:24pm — No Comments

lil miss likes to keep me on my toes....

i had just got done blogging that her blood pressures have been hanging out in the 120/60 range and then i gave her, her evening pills and took her blood pressure and to my suprise her blood pressure was 86/57 and 89/49 i did what any good mom would do i got all stressed out and paged the doc.. i watched her closely through the night and took them again this morning and 100/50 without any meds our doc said hold the meds this morning.. i took again about an hour ago and they were 107/50 range no… Continue

Added by lisa ann peterson on December 14, 2009 at 5:59pm — 8 Comments

You won't believe this story!

My friend has a child, 15, who began coming in her room at night with a terrible fear of dying-a so far very healthy child, select sports, good grades, these fears escalated within a few days to full-out panic attacks. She takes the child to the Dr., who agrees it probably is panic attacks, but is a young doc and wants to make sure this is all, so he sends her to a children's hospital who after an echo, diagnoses a heart condition, the one that goes undetected for years and suddenly the child… Continue

Added by Cheryl Biermann on December 14, 2009 at 2:02pm — 3 Comments

We are in the home stretch....

Hello everyone!



First off, I want to wish everyone a Blessed and Merry Christmas! This is by far my favorite time of year! I love to see the sparkle in Jonathan's eyes as we celebrate Christmas, the winter months, and the joy of family and health...With that said, we are in the final week of Home training for Hemodialysis!!! I have been accessing Jonathan now for almost 3 weeks, and he told me yesterday that I am doing such a wonderful job....It really makes my heart melt to hear him… Continue

Added by Donna Kolp on December 13, 2009 at 9:45pm — 8 Comments

ah the stressful time of year.

I know that there aren't many patients on here that are in college. But, this stressful time of year is getting to everyone, everywhere I go, I have friends freaking out about finals-saying that they aren't going to pass. What happened to positive attitude? Several individuals that know me, have noticed that I have a lot of confidence this year than I ever did in the past. Well, I am doing better only for one thing, my study habits have changed immensely since my first year of college. I tend… Continue

Added by Jessica Olivia Frysz on December 13, 2009 at 1:37am — 4 Comments

see dialysis forum

Because the forums have been a little bit quiet lately, I thought I'd let everyone know there's new information on the dialysis forum about low H&H treatments. Thanks!

Added by Cheryl Biermann on December 2, 2009 at 7:28pm — No Comments

Shop and Search through iGive.com

Tis the season for thoughfulness as well as holiday shopping, so why not combine the two and log on to iGive.com when searching or shopping online. Every time you shop online, over 750 online retailers (like Sears, eBay, QVC, Expedia.com, BestBuy, FTD.com, Magazines.com, ToysRUs and Amazon) donate a percentage of the sale to your chosen cause, The Foundation for Children with Atypical HUS. Yes, you can still use coupons and search for the best deals - iGive.com costs nothing, yet it will… Continue

Added by Linda Burke on December 2, 2009 at 1:00am — No 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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