The Atypical HUS Foundation

August 2009 Blog Posts (12)

the newest update

Well, I had my stress test, PASSED it with flying colors, but on the other hand, they found something wrong with my left atrium on the echocardiogram. The nephrologist is telling me to stay calm and not be alarmed, it could be nothing, how can I be calm? When there is a kidney transplant on the line here? I'm still moving up in the process, but it's going to take a little bit longer than expected. I now have to go get a CT scan of my left atrium, and go from there.



I am also doing a… Continue

Added by Jessica Olivia Frysz on August 27, 2009 at 11:20pm — 11 Comments

Copy of email from Bill Biermann (foundation director) looking for final counts for Fall Conference planning.

Hello All,



I hope all is quiet, and back to school for many of you.



Right now, I have 16 parents who have expressed a ‘strong’ desire to attend our Oct 17th conference. Just to reiterate the details, October 16 (Friday) is early arrival time, and the Foundation would sponsor a late dinner, around 7pm, at a nearby restaurant. On Saturday, we would start our conference at 8:30. We will finish up the day at around 4pm. The Foundation would supply continental Breakfast, lunch… Continue

Added by Heather Still on August 26, 2009 at 8:07am — 30 Comments

Tending the Garden

During the last few hazy days of summer, this gardener always gets distracted by summer fun. Quick - September is coming, so let's rush to cram in all the noisy activities, day trips, and play dates we can! Visit friends and family - try out that new ice cream flavor at your favorite hangout, and why wait until after dinner? Then you go into the coolness of your yard to pick a few beautiful blossoms or harvest some luscious garden treat and - yikes- spot a bountiful crop of weeds! Nothing like… Continue

Added by Linda Burke on August 24, 2009 at 2:00pm — 3 Comments

Clinic update for Hyde

Hi everyone - after Amy's post I realized I could just post here the updates that I do on our carepage - for some of you this will be a duplicate so just ignore one! ;-)



Hey there everybody - we survived clinic today. I think the bad part of Hyde getting older is he gets smarter. As soon as we turned into the parking lot at Egleston he started SCREAMING - and continued for probably 45 min or so until after we got in and up to the 6th floor. (I don't WANT to go to CLINIC!!!) He wasn't… Continue

Added by Phyllis Ann Talbot on August 24, 2009 at 1:29pm — 4 Comments

update for chloe

chloe had an appt on the 17th of august i have been in sort of a funk since iam trying to pull myself out iam getting closer everyday. chloe is plasma free now for 3 months on the 17th of september it will be her 4th month the longest time without plasma for her has been 4 months and iam nervous.. her H&H remain stable thank you epogen and her bun was 26 and creatnin is 0.38 these are all good news but doc told me that her c3 and c4 are still very low which means that her complement system… Continue

Added by lisa ann peterson on August 24, 2009 at 11:38am — 3 Comments

Update on Brody

I love reading updates on how everyone is doing; I wish people would write more! I figured I couldn't ask this unless I in fact gave an update on Brody also. I wish I had more time to write and correspond more on this wonderful site but with a lively 16 month old and a wild 3 1/2 year old, time to myself is rare so I must savor every second! Oh the couch feels so good!

Brody has had only two fresh frozen plasma infusions in the last 40 days (1 every 20). Here are his labs from last… Continue

Added by Amy Swarbrick on August 23, 2009 at 12:00am — 3 Comments

How to Get and Use Your aHUS Badge

Hi All,



I have been getting some feedback that people are having issues getting their Badge to work. So, I have put together a pdf with instructions on making and using them. Just click on the link below.



I hope you all get out and use them. They are great for letting people know about the site.



Thanks,

Christy…



Continue

Added by ALPHA MARKETING on August 22, 2009 at 8:49pm — No Comments

Not out of the woods yet, getting closer to the light at the end of the tunnel though

Well, tomorrow is the day of my stress test and my EKG, this is only part of what seems like a dream to getting closer to the biggest goal of all, the kidney transplant I have been waiting for, for 10 years just about, I'm getting a little nervous about the exercise stress test, because I have never had to be on a treadmill for 20 minutes and trying to gradually get up to 80-85% seems like a lot for a little person like myself, but according to most of the people that I know, they say I can do… Continue

Added by Jessica Olivia Frysz on August 17, 2009 at 11:39am — 3 Comments

Introduction

Greetings! I've been lurking on the periphery for a few years, but I'm glad I found this forum tonight. I was diagnosed with aHUS in 2000, at the age of 19, and ESRD shortly thereafter. I had a functional transplant from 2005-2007, but I'm currently on peritoneal dialysis. Right now I am able to work full time as a research techician in molecular biology.

Wishing everyone health and happiness...and looking forward to meeting you.

Added by Grace on August 11, 2009 at 9:49pm — 6 Comments

Anna

We had great weekend Anna been invited to participate at Air Challenge. This is organization that lets kids with mental or medical problems experience small planes ride. Anna and other my kids had so much fun there, they want to go back there next year.

Anna been doing well with by weekly plasma exchange i don't think they will spread any far for right now, eventually they want to stop, but not until the research will be available. Her labs been staying well, only issue she has is she… Continue

Added by Svetlana Finley on August 10, 2009 at 2:26am — 3 Comments

blood drive

first off i want to thank the omak community for all you love and support of my beautiful little girl chloe... we had a very successful blood drive for a small community. our goal was 55 donors and we had 71 units of blood donated that is truly amazing. 71 lives are saved because 71 people who love my lil girl donated blood. we got to take chloe to the rodeo last night she loves bull riding and the clown. she had aot of fun and so did we. we are relly loving that she is doing well and we… Continue

Added by lisa ann peterson on August 9, 2009 at 5:47pm — 1 Comment

Moving on in the process

Well....recently I was told that I will be heading back to Johns Hopkins to meet with yet more doctors and get yet more tests done, all preventative measures before pursuing my gift of life. I have to go back in September to meet with 3 more doctors, most likely staying overnight in Maryland with my sister and then heading back to Buffalo hopefully in time for my treatment. I'm a bit nervous about this, but what do I have to lose? All I can do is try, right? There is no harm in trying, and I'm… Continue

Added by Jessica Olivia Frysz on August 5, 2009 at 9:16am — 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.

************************

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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