The Atypical HUS Foundation

July 2011 Blog Posts (17)

Alert on potentially dangerous situation for hemodialysis patients

I didn't want hemo patients to miss the information so I am blogging this first to have you please look at the dialysis forum for information about dialysis tego ends.  This is important knowledge for hemo patients.  Proceed with this information as you see fit.

Added by Cheryl Biermann on July 30, 2011 at 9:30am — No Comments

Failure of dialysis catheters' tego leads to colorful trip to the hospital

Imagine, if you will, being woke up by your eleven year who says, "Mom, look what happened to me".  You open your eyes to see his chest covered in blood, and one of the dialysis clamps opened.  You immediately clamp it and look for more information-okay, he's standing, not panicking, breathing and talking; good.   Both catheter ends are drenched in blood.  The dialysis tubing looks in tact.  The exit site is still intact and covered with tegaderm so your theory leads you to a loose tego.…

Continue

Added by Cheryl Biermann on July 28, 2011 at 2:26pm — 4 Comments

Long Over Due Update on Ben

First, the Aguallo Family extends our heartfelt thoughts and prayers to those recently diagnosed or currently struggling to keep this disease and all that comes with it under control.  Each time we see a new member or an update detailing a struggle our heart aches.... Please know you can always reach out to our Family!

 

It has been a few months since we updated you on Ben's Status.  As many of you know, we keep a Facebook Page "Get Well Ben Aguallo", but we haven't updated…

Continue

Added by Jonathan Aguallo on July 27, 2011 at 9:05pm — 1 Comment

Amazing animal encounter on Sunday 7/24/2011

On Sunday July 24th, 2011 I didn't even know what kind of luck I would be having until something amazing happened. My parents and I went to a Wildlife Rehabilitation Center called Hawk Creek here in NY. This center doesn't get funding from the state or other means, so they have to have fundraisers to raise money to help take care of the animals they take in. They were having their annual Renaissance festival that they hold every summer pretty much.  This center is so good in that it takes in…

Continue

Added by Jessica Olivia Frysz on July 26, 2011 at 12:08pm — 2 Comments

Lou-Anne / News from France

Lou-Anne is grafted since July 15. It is through the financial support of Soliris in our hospital we were able to transplant.

At 10 days, all is well. The three injections of Soliris are not raised worries. No side effects. Good renal function and blood work normal complement.

This long-awaited moment has finally arrived. What happiness! One week intense emotions, stress and anxiety.

We were on a driving holiday when we call for the transplant. Half turn. We were in the center of… Continue

Added by Nicolas on July 26, 2011 at 10:04am — 2 Comments

Practice Good Internet Awareness with Contacts

Every now and again we all face crossroads and hope that our decision-making skills are at their finest. 

Personally, I prefer fun little decisions about frivolous matters ....it gets a bit tricky when I hit a grey area regarding ethics and privacy concerns to keep this online aHUS community an open exchange of support and reliable information.

Protecting the privacy of website members is a serious and important area of concern, so when…

Continue

Added by Linda Burke on July 23, 2011 at 11:34am — 1 Comment

Hi!!

I am very happy to be part of this community, because now I'm not alone in this.



Thanks to Maria Vicenta for all the support and thank you all for the welcome.



I hope to continue making good friends… Continue

Added by TAMARA FERNANDEZ MEGIAS on July 22, 2011 at 3:35am — 2 Comments

disappointment is never easy to take.

Today I receive a phone call from an individual who was very much committed into getting tested for me to donate a kidney to me. Unfortunately, the HLA 1 did not match, and I am back to square 1 again. However, there is another individual that will be getting tested next week, so we will see where the road may lead us. It is one thing about living with this disease as well as being on dialysis for 22 years has taught me is that disppointment is no easy ride to ride. Disappointment is the…

Continue

Added by Jessica Olivia Frysz on July 21, 2011 at 2:32pm — 6 Comments

MY LITTLE HISTORY

Hi all, I come, my name is Tamara and I am a kidney patient on dialysis because of atypical hemolytic uremic syndrome, which develops after giving birth to my son in 2008 and in conjunction with taking birth control pills.

I am currently pending completion of a genetic study to assess the situation of my…

Continue

Added by TAMARA FERNANDEZ MEGIAS on July 21, 2011 at 10:38am — 5 Comments

Holding steady and preparing for the craziness!

Well - we got our first labs back from after the double Eculizimab dose - and good news is his haptoglobin didn't really drop much, bad news is it didn't really go up. We spoke to Dr. G and he's not really that concerned - it's still in the 'normal' range and all the other labs are doing very well.  So we'll just stay calm on this and have faith that he is doing fine. 



We had a blast yesterday at Six Flags - the kids are WAY tougher than either Bill or I - we both were not happy… Continue

Added by Phyllis Ann Talbot on July 20, 2011 at 4:19pm — 2 Comments

Genetic Results....

Hello to all of you!  I am first of all happy to report that Marissa is doing wonderful since stopping the plasma-pheresis is November.  She is still in remission, we are so thankful!  Still of course is on 3 different meds for her high blood pressure, but it is being controlled.  This summer she has been in swimming as much as she can, and she also has just got her first horse, Chief.  I have no doubts that he will be some great therapy for not only her but me too!  She has such a love for…

Continue

Added by Sharon Madrid on July 19, 2011 at 9:44pm — 7 Comments

New to the site, looking to connect with other kids.

I am 12 years old and I have ahus and I like spending the night at my cousins house. Then, whenever me and my cousin get hot we like to go swimming and I like to play baseball.

Added by Ryan Still on July 16, 2011 at 5:42pm — 3 Comments

No news is good news.

So, I haven’t updated for a long time—basically because everything has been rock solid. Coen has been on Soliris for nearly 2.5 years. I can’t believe it has been that long already. The disease continues to be in remission and he is thriving. Kidney function has not improved or declined during that time. Creatinine still sits at 1.6 consistently.  We just changed insurance company’s for the 4th time since the start of Soliris and luckily, once again it got approved without a…

Continue

Added by Jodi Kayler on July 13, 2011 at 12:25pm — 4 Comments

Best option for a transplant?

Hi all,

 

Here's a brief summary of my medical condition:



- Diagnosed with aHUS in July 1997 following vaccination

- Immediately put on hemodialysis

- Transplant in November 1998 - mother donated

- Recurrent HUS after 11 days

- Back on dialysis

- On PD for 6 years

- Currently on daily nocturnal home hemodialysis

- Hepatitis C Positive

- CFH/CFHR1 hybrid gene detected



I would like to go for a…

Continue

Added by Kamal D Shah on July 8, 2011 at 1:08am — 6 Comments

Great 4th of July weekend and a little bit worried

Here's our carepage update - quick question in this for any of you on Eculizimab (especially kiddos that have grown) - did you have any hiccups in the haptoglobin (or any other #'s) when you're little ones got close to weight cut-off's for dosage changes?  Just curious - read below....our haptoglobin had been in the 100's and then dropped to 98, then 43, and now 39?  We doubled the Eculizimab dose last week so don't have any labs SINCE that - so hoping that will turn this around but just…

Continue

Added by Phyllis Ann Talbot on July 6, 2011 at 2:53pm — 5 Comments

For those who could not attend the conference.....

WWW.AHUS.ORG.UK

 

 

Kind rgds,

Theresa

Added by Theresa Pereira on July 5, 2011 at 2:11pm — 6 Comments

Some good news.

I hope that everyone had an enjoyable 4th of July! As I sat in my dialysis chair today receiving my god knows what number treatment it is for me, for the 4th of July...I look at some of the empty chairs and wonder geesh people are lucky to get in early! But you know, it doesn't phase me anymore, I go to treatment on holidays without ever knowing what the future may bring.  Dialysis doesn't take a day off just because it's a holiday I have learned, a life long lesson I have had to contend…

Continue

Added by Jessica Olivia Frysz on July 5, 2011 at 12:36am — 2 Comments

Monthly Archives

2017

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