The Atypical HUS Foundation

July 2009 Blog Posts (12)

Today is a Gift - Let's Celebrate

"Yesterday is history, tomorrow is a mystery. Today is a gift - that's why it's called the Present!" What a motivating statement about the importance of capturing the joy in each day - even those days when you have to search hard for the tiniest glimmer of light. I wish I could definitively credit the source of this inspirational quote, as I did look online and discovered that either Eleanor Roosevelt and Emily Dickinson might be the author. Let me first remind you that I live in a house filled… Continue

Added by Linda Burke on July 27, 2009 at 1:30am — 2 Comments

Life-the poem

Life is like a road being constructed on, with no detour signs.

Which way to go? Left or right?



Life is full of struggle, we face them everyday, but what if you're facing death in the face?



Death is so cold and unwelcome that you just want to run and hide. His deathly touch just makes you shutter with fear that you shout HELP! But no one can hear.



What if your life is full of death, that you constantly fight him?



You fight, fight, fight your… Continue

Added by Jessica Olivia Frysz on July 25, 2009 at 12:41pm — 1 Comment

a life changing event, long road ahead

As some of you may have read in my mom's blog, I have gone through 2 transplant evaluations, one of which didn't turn out so great. Well, I'm moving onto the next step of my process, I have to go and get a stress test and an EKG, which means now I have to go see a cardiologist. They tell me that for the stress test, I have to reach 85% which I think I can do, because if I dance, and do the kidney walk without stopping, I think I can reach their standards, what makes me nervous about the stress… Continue

Added by Jessica Olivia Frysz on July 24, 2009 at 2:47pm — No Comments

Transplant evaluation

Hi everyone!



I've now gone through two preliminary transplant evaluations. One at Johns Hopkins and the other at Mr. Sinai in NYC. I really felt confident in the Johns Hopkins team. They did not try to bull doze us with info or skew what we already know. They do of course want more testing done before listing Jessica. We knew that would be. However they did address our concerns about her bladder without our having to bring it up and they all said she was a challenge and it would be… Continue

Added by Colette Ann Frysz on July 24, 2009 at 1:30pm — 1 Comment

Taking things one day at a time

Well, hi everyone I'm Jessie, I am the daughter of one of the members here on this website., I'm 21 years old and have been on dialysis since I was 11months-1 year of age. Well.... to start off with, I have been battling a cold, so if I don;t post anything for a while, it means I am not feeling to well.

I am taking things one day at a time, because from what my mom has said several times is that science is not catching up to me fast enough, and that's very hard to hear when I have been on… Continue

Added by Jessica Olivia Frysz on July 21, 2009 at 11:01pm — 4 Comments

What's Your Action Plan?

Thanks to all of you, this interactive social network is providing information, support, and insight into the aHUS experience. Some interesting factoids...



*Three young aHUS patients represented on this site are currently on a Soliris treatment regimen. Previously, only a handful of aHUS patients had utilized Soliris in their aHUS protocol - and all of them were Factor H. Only 1 child out of these 3 has a Factor H mutation, as identified by genetic testing, yet the 3 children… Continue

Added by Linda Burke on July 20, 2009 at 10:30pm — 2 Comments

Scott Woodruff's ride for AHUS and Cancer

Scott Woodruff is my cousins oldest son and lives in the Dana Pt. area of Southern California. I would like to personally and publicly thank him for his efforts in raising monies on behalf of "The Foundation for Children with AHUS"
Recently he rode 100 MILES! on his bike and was able to raise over $1,000.00 dollars for AHUS. I'm sure I speak for all families who have children suffering with AHUS that his extremely generous efforts are much appreciated. Thank You Scott!

Added by Stephen Bradford Burke on July 18, 2009 at 5:22pm — 1 Comment

Our son Jacob who is now 7 years old, was first diagnosed when he was 6 months. He has been doing well and not in the hospital for almost 4 years now. It is hard for me to go back and think about wha…

Our son Jacob who is now 7 years old, was first diagnosed when he was 6 months. He has been doing well and not in the hospital for almost 4 years now. It is hard for me to go back and think about what he went through. He was in the hospital at 6 months, 8 months, 3 years, and also spent his 4th birthday in the hospital. He has had multiple transfusions and dialysis and many other complications. He has a fever right now and we are awaiting his lab results. He currently takes lisinopril and… Continue

Added by Andra Killian on July 10, 2009 at 11:32am — 10 Comments

aHUS Bike Ride Update

I just got back from my aHUS fundraiser at my local watering hole, and it was a great time with a great turn out! We raised $350 from just cash donations for the Foundation! It was great for everyone to come and show their support on a Wednesday night.

I will be riding my bicycle 100 miles in San Jose this Sunday for the Foundation for Children with aHUS, and I'm really excited. I will have my blogging device with me during the ride updating it for all to see. Seriously. Check out… Continue

Added by Scott Woodruff on July 9, 2009 at 2:21am — 3 Comments

If You Build It, Will They Come?

Hooray for Us! This website is a month old, and it's great to see the exchanges taking place among families. As we share information, we not only gain support and inspiration from each other but we can serve as a portal for researchers interested in aHUS issues.

How will investigators and families dealing with aHUS find us? Only through YOUR efforts ......

Where are the other 270+ patients/families struggling with aHUS in America? Your doctor may have been contacted by another… Continue

Added by Linda Burke on July 7, 2009 at 9:28am — No Comments

chain reaction

the people in my life are amazing so i sent out the message about the pearl bracelet and how much this foundation and the research for chloes disease means to me and my dearest friends and my sister both understood the value behind the idea and they each purchased a bracelet so now chloe will have one to match the chain reaction, this has caused is amazing it is so nice to know that people love my lil girl as much as i do. this was more of a response than i was expecting and iam thankful that… Continue

Added by lisa ann peterson on July 2, 2009 at 11:09am — No Comments

Febrile seizures??

Hi there - this is kind of a generic question for everyone out there - Hyde went to the emergency room in an ambulance last night after having an apparent febrile seizure. This is the second time this has happened to him - the first was in January of this year. Both times were about a day after he came down with croup and his fever was around 101.6 - 102. We know about the risk of seizures with AHUS and given that - after Hyde's first seizure we went ahead and did a sleep deprived EEG, etc. and… Continue

Added by Phyllis Ann Talbot on July 1, 2009 at 7:51pm — 6 Comments

Monthly Archives

2016

2015

2014

2013

2012

2011

2010

2009

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service