The Atypical HUS Foundation

September 2011 Blog Posts (13)

Today, I love the FDA!!!

Say what you will about bureaucracy, today, I am happy with the FDA! Smiles abounded and a few tears were shed when my family found out that the FDA had finally approved Eculizamab for the treatment of aHUS. My nephew, Isaiah has responded AMAZINGLY well to his biweekly Soliris infusions.

 

My brother shared his…

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Added by Sarah Brewer on September 26, 2011 at 5:02pm — 1 Comment

FDA Approval for Soliris (Eculizumab) REJOICE !

 

A  heartfelt thanks and gratitude for all of the hard work and dedication exhibited by the staff of Alexion.  Their vision made the dream of a significantly better treatment for Atypical HUS  a reality.  Endless hours of research,were involved, folllowed with the effort of  accelerating the FDA approval for Soliris, (Eculizumab), and most importantly, and their dedication to rare diseases.

A big Thank you is also in order to the…

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Added by Bill Biermann on September 23, 2011 at 4:47pm — 9 Comments

Update on Ben Aguallo

We wanted to take a moment to give you guys an update on Ben.  Today, we reached another milestone.  The doctor's are starting to ween Ben off of most of his blood pressure medications.  We will stop Lasix as of tomorrow.  Overall, Ben seems to be in good health.  We have noticed that if we push his plasma infusions beyond 10 days or so, platelets seem to be more in the low 200 range than in the mid to upper 200s.  We aren't quite sure what that means, but it is a trend and one we are going…

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Added by Jonathan Aguallo on September 19, 2011 at 6:09pm — 2 Comments

T-Bone Flinn

Tristan had a great checkup with Dr. Nester last week. His BP's have been perfect, labs looked great, K+ is staying normal even without kaexalayte. Protein has come down a lot in his urine too thanks to Lisinopril. He grew a little over the summer :) I was very proud of him when he sat all by himself and had his labs drawn, all I had to do was hold his hand. Then of course he covered himself in stickers to make the owee better. We call it arm pokey. He knows what to expect now and doesn't…

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Added by Wendy Flinn on September 16, 2011 at 5:01pm — 2 Comments

What hotel for conference?

I am wondering those who coming to the conference what hotel everyone planing to stay? I would like to stay where other will be staying, so we can carpool.

Added by Svetlana Finley on September 15, 2011 at 10:21am — 4 Comments

Update on Anna and CD46

Hello everyon!!!

It's been awile since i updated on Anna. She is been doing well and enjoying gymnastics. Today we had our visit with our doctor, Annas labs continue stay where we like them too. They took her off blood pressure medication one medication less ;-) We also had disscation on some testing they did in the begining this year so she is positive for CD46 and she just below range for Factor B normal for it was 20-51 and hers is 19, so our doctor dosen't know really if that is…

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Added by Svetlana Finley on September 12, 2011 at 11:48pm — 2 Comments

patient and family meeting In London 10-9-2011

 Hi All

 I want to update you all on the meeting which took place in London yesterday following the aHUS patient and family conference in June in UK. The strong feed back from the conference was the need for a patient family group and with the help of Professor Tim Goodship  the meeting yesterday was to discuss and form a charity patient group. Only 6 families attended and I'm delighted to say a interim board of trustee's was elected. Please conatct me for more info

The…

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Added by debbie thelwell on September 11, 2011 at 5:11am — 3 Comments

Nathan's mini-series

Here is, what the fourth update in Nahtan's transplant?  Yesterday morning Nathan's numbers went up again, so not wanting to wait for rejection to slap us in the kidney, or ignore possible reaction to his anti-rejection med, he had a kidney biopsy.  Luckily, pathologists were around, or kind enough to come in to read the results.  There was NO rejection!  However, they also did a Prograf level and we found that it was on the low side, 6, (should be 10 or so), BUT Nathan's kidney shows toxicity… Continue

Added by Cheryl Biermann on September 10, 2011 at 7:23pm — 2 Comments

cahterization leads to better numbers

Hello everyone, we've had some news, the catherization lead to lower BUN and creatnine!  Which means he needs to have his bladder stretched, this is the one test he has dreaded for years so his worst nightmare has come true, he would have preferred rejection, I think!  On the other hand it is good news in that the docs think his bladder is still flexible enough to be able to stretch. 

 

He did allow us to distract him with the world's longest Clue game in history, him vs. Team…

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Added by Cheryl Biermann on September 8, 2011 at 7:12pm — 5 Comments

Why updating renal patients is always a challenge

So after yesterday's optimism, comes what we have become used to, the glitch, the bump, the puzzle.  Today, most of Nathan's labs were good, I'll let Bill post specifics in his forum, but the creatnine and BUN jumped up significantly.  Other labs ruled out aHUS ramping up. The first thought was rejection, so a biopsy was considered.  Here usually the nephrologists do the biopsy, but because Nathan's kidney involves his peritoneum, they wanted his surgeon.  Her day was rather hectic, so as…

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Added by Cheryl Biermann on September 6, 2011 at 7:15pm — 7 Comments

Posts from the Biermann Family

     Bill Biermann, Director of the Foundation for Children with Atypical HUS,  has created a new Forum on this site, "Post Soliris and/or Post Transplant by the numbers" to share lab values associated with his son Nathan's renal transplant with supportive Soliris therapy.…
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Added by Linda Burke on September 5, 2011 at 11:22pm — No Comments

"My Page" Tab Problem

Friends,

 

    We're experiencing difficulty with the "My Page" tab....entirely my fault, I'm afraid.  While we work to restore this shortcut function to access your page, I'd appreciate your patience and ask that you use either the Search Bar or the 'Members' tab.

 

    The Search bar is located above the cute colored photo bubbles of our aHUS children, look in the uper right of your screen and simply type in your name (click on the results to open your personal…

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Added by Linda Burke on September 2, 2011 at 10:36pm — No Comments

Through it all we all just stand up

Well, I was listening to some music and found a song that is titled "Just Stand Up" it's dedicated to cancer, but in my eyes this song is dedicated to this disease as well, since we are all standing up to it and fighting it. If you read the lyrics you will see why. If you ever want to hear the song, there are various artists that sing it, but it is sung by Beyonce, Rhianna, Fergie, Miley Cyrus, Sheryl  Crow and many others.  Everytime I sing along to this song though, I end up tearing…

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Added by Jessica Olivia Frysz on September 1, 2011 at 11:14am — 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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