The Atypical HUS Foundation

December 2011 Blog Posts (9)

Just a little summary .

Im only 15 yrs. old and around early October I was diagnosed with Atypical H.U.S. This journey has not been quite easy for a teen , but I have faith everything will get better. On September 16, 2011 I had surgery due to a perforation in my colon and now I have a Colostomy. At first it wasn't easy to accept this new concept but luckily mine is reversible. All of this occurred in Toronto, Canada Sick Kids Hospital . It was on a family road trip which didn't end up so well . The sickness…

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Added by Ivette Rios on December 26, 2011 at 7:00pm — 2 Comments

Merry Christmas to all AHUS families!

 I would like to take the time to wish all of the Atypical HUS families a very Merry Christmas and a healthy happy new year! I hope that 2012 will be better for all who have been touched by this disease, including myself. I may not have a job yet and I certainly may not have a kidney just yet, but I am hoping that 2012 will be bringing me better things to look forward to. One thing that will HOPEFULLY be occurring is a potential trip to California to attend a renal teen prom sponsored by the…

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Added by Jessica Olivia Frysz on December 25, 2011 at 1:47pm — 4 Comments

Merry Christmas and Happy New Year

The Aguallo Family would like to wish everyone a very Merry Christmas and aHUS free New Year!  We love each and every one of you!

Added by Jonathan Aguallo on December 23, 2011 at 8:13pm — 2 Comments

Keep Looking for Creative Solutions in 2012

Technology may yield some impressive press for innovations in 2012 and beyond, so please scan your news sources and draw our attention to any stories, articles, or research that may be of interest to the aHUS community.

While it remains to be seen whether Dr. Shuvo Roy and his team at the University of California will continue to make good progress with their artificial implantable kidney, we applaud the efforts of all researchers and clinicians worldwide who strive to improve the…

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Added by Linda Burke on December 20, 2011 at 12:57am — 1 Comment

Merry Christmas everyone!

Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones.  So my proposal is everyone offer a little prayer and send your thoughts heavenward that we all stay well or get well in time to enjoy this wonderful season.  If any of you find yourself in a bad health situation, please let us know and we will flood you  with prayers and…

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Added by Cheryl Biermann on December 16, 2011 at 11:08am — 4 Comments

Update

Hannah is responding wonderfully to the Soliris treatments. She is still receiving them every two weeks (due this Friday). Her kidneys have returned to 100% function, she continues to gain her weight back and is considering enrolling in school after the holidays. Still, the most devastating for her, is the loss of her hair. She is still beautiful, but it's hard to convince her. Very traumatic. Please continue to pray for her as her doctors determine the appropriate time to "wean" her off…

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Added by Danna Vaughn on December 13, 2011 at 7:58pm — 1 Comment

Triple bouts with bad news

As my last blog stated my luck could be changing well... that isn't true anymore. What seemed like things were moving onward are now back to square 1. I interviewed for that job, didn't get it. I called the other veterinary clinic I interviewed at and was told that I would be considered for part time, instead of full time (which is partially good news). And lastly, the kidney front is now back to square 1, because my donor is now not a candidate to donate a kidney. So, I had suffered at…

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Added by Jessica Olivia Frysz on December 12, 2011 at 4:04pm — 5 Comments

Full Time School

Today  was Nathan's first day back to school.  I have been impressed with the school nurse since I met her last year...now I know for sure Nathan is in good hands.  He is lucky enough to have been assigned a locker with a boy whose mother wsa his kindergarten teacher and is a good guy himself.  This is our first attempt at a regular school year! 

We are still doing weekly labs, but we have an option to do them in the evening!  We'll have to see how it goes, if they are as effecienct…

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Added by Cheryl Biermann on December 7, 2011 at 11:24am — No Comments

Regarding Mubodina

     Since some speculation has arisen regarding a possible new drug on the horizon for aHUS patients, I wanted offer the few facts I found on the topic.  On Nov. 3, 2011, the “Bio in Italy Newsletter” noted that Adienne Pharma and Biotech based in Bergamo, Italy was granted patents for Mubodina®.  The article states that this Italian company, specializing in rare disease treatment and with a number of Orphan Drug Designations granted by EMA and FDA, was granted patents in both the European…

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Added by Linda Burke on December 1, 2011 at 1:30am — 1 Comment

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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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