The Atypical HUS Foundation

November 2013 Blog Posts (13)

New to aHUS

Our 7 year old son was diagnosed last week with aHUS by the doctors at CHOP in Philadelphia. Trigger occurred in October and we have been battling this last month. CHOP docs have been amazing, fast acting and proactive. Zach has already received his first round of Soliris. We are scared, and adjusting to the new normal and trying to make sense of it all. Any words of advice anyone can pass along?
Kim Duck

Added by Kimberly Duck on November 29, 2013 at 11:58pm — 7 Comments

Happy Thanksgiving from the Aguallo Family

The Aguallo Family would like to wish everyone a Happy Thanksgiving. 

We haven't posted in a while.  As many of you know, we moved from Charlotte NC, to Northern CA in the summer of 2013.  This was a big move given Ben's aHus and our deep connection to his medical team; however, life goes on and so do we...

Overall, we have been pleased with the care at Standford Children's Hospital. We have adjusted slightly a few blood pressure medications, and decided to give home infusions…

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Added by Jonathan Aguallo on November 28, 2013 at 9:17pm — 3 Comments

MIRACLES DO HAPPEN!!!!!

Praise God!! Kasey was taken off dialysis this past Monday!!! Here kidneys are showing positive signs of recovery so NO MORE DIALYSIS!! If she continues to progress she will have her port taken out next Wednesday!!!! She can go back to school in January!!!  This Friday will be her 6th Soliris infusion. We are hoping that the hemolysis will stop after this treatment. Thank you all for your kind words of encouragement and your prayers!

Added by Kris Carrender on November 20, 2013 at 4:09pm — 6 Comments

2013 aHUS meetups-Chicago Update

The meetup in Chicago went very smoothly.  I was priveledged to meet Nicole Boice of Global Genes, Nancy Harris, the moderator, Dr. Amy Bobrowski, who covered aHUS Medical Updates and Discussion, then everyone had to listen to me ramble on.  We were happy to hear from Anne Neumann, R.N., One Source Case Manager, who reviewed available resources, Maya Doyle, LCSW-R, P.D. offered insights and tools for patients and families living with rare genetic disorders and we also heard an impassioned…

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Added by Cheryl Biermann on November 17, 2013 at 3:39pm — 1 Comment

last weekly dose of Solaris

We are having our last weekly dose today! I guess he will be receiving 1200mg every two weeks. His blood pressure study showed some high pressure so he will now go onto some medication to control that. His numbers are looking normal. And his favorite part of the day was he was released to participate in weightlifting. So happy he is getting back to his normal self! My only worry is he is gaining weight fast well what I find fast 4lbs in a week maybe the Solaris? Or just him not getting enough… Continue

Added by Jennifer Schroeder on November 15, 2013 at 11:44am — 3 Comments

Isla Relapse

Hello everyone.  It has been a while since we posted but we have been busy with work and keeping up with two kids.  I do keep up with the posts and information though.  Isla had a wonderful summer and had been very healthy.  She learned to crawl and talk and has made huge strides in her life.  And then came two weeks ago.  She had a high fever for a couple of days(this virus was making its rounds in the area) and she relapsed two days later.  We went to the doctor and her platelets had…

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Added by Dustin G. Wiggins on November 14, 2013 at 2:46pm — 14 Comments

EVENTS and aHUS Info

 

     In addition American meetings such as the upcoming to Global Genes aHUS Meetup in Chicago on Nov. 15-16th, and the NORD aHUS Regional Meeting in Carlsbad CA on Dec. 6-7th, there's a great opportunity for aHUS patients and their families in the UK on Nov. 23rd at Solihull in Birmingham…

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Added by Linda Burke on November 13, 2013 at 12:30pm — No Comments

New Soliris Research

Online today I saw that there was new Soliris research presented 11/7/13. It was a case study done to show how well Soliris does with aHUS. However, it didn't really present any "new" information that I didn't already know. Unless I'm not finding good articles that state more. What about everyone else? If you can send me some articles, I would appreciate it! :-)

Added by Lisa Stockdale on November 12, 2013 at 3:09pm — 1 Comment

ASN - Kidney Week 2013

Hi everyone  - wanted to let everyone know what a great time we had at ASN/Kidney Week this past week here in Atlanta!  The Foundation was well represented by both us (the Talbot's) and the Hearns.  There was alot of interest in AHUS and the Foundation.  We handed out alot of information and sent many dr's with AHUS patients back with our new lab tracker and patient self advocacy tools Linda had worked so very hard on.  We met dr's from all over the world (including our friend Lou-Anne…

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Added by Phyllis Ann Talbot on November 11, 2013 at 7:59am — 2 Comments

New Tools Created for Rare Disease Patients

 

 

     The Foundation for Children with Atypical HUS is pleased to announce the creation of its Grab ‘N Go Toolkit, distributing our innovative LabTracker and Patient Self-Advocacy Tool at ASN’s Kidney Week in Atlanta (via our booth Nov. 7-9th at this nephrology conference) and at the aHUS regional meetings…

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Added by Linda Burke on November 7, 2013 at 4:37pm — No Comments

My 19 year old daughter diagnosed with aHUS....we think

Hello everyone. My name is Kris and I am the mother of 2 beautiful girls, Hilary 20 and Kasey 19.

On Monday, September 9th, 2013, my daughter Kasey called me from her dorm room at Kent State and told me she had the flu. She complained of the chills and diarrhea. I told her to make sure she stayed hydrated and to call me the next day. She called me on Tuesday and said she still had the same symptoms, I told her to go to the clinic and she decided not to because she "just had the…

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Added by Kris Carrender on November 7, 2013 at 4:12pm — 6 Comments

Mayo

Went to the Mayo Clinic in Rochester in October for a second opinion.  They agreed that I have aHUS, did a lot of testing to be sure.  They told me Great Falls was doing everything they should be in treating me.  That was comforting to know!  We did genetic testing, still waiting for that to come back.  I guess I needed to do it in the transplant process so just went ahead and did it.  I know there is a good chance that the genetic testing will come back negative.  The doctors at Mayo said…

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Added by Kristen Bruner on November 5, 2013 at 6:57pm — 4 Comments

We are going to ASN!!!

For the 2nd year in a row - the Foundation for Children with Atypical HUS will have a table at the the ASN (American Society of Nephrology) meetings.  Due to convenient scheduling - the table will be manned by the Talbots (on Thursday, Nov. 7 and Saturday, Nov 9) and the Hearn's (on Friday, Nov. 8).  We are excited to meet and greet and help spread the word about the Foundation for the dr's to take back to any patients they may have that are interested.  We'll be handing out all the amazing…

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Added by Phyllis Ann Talbot on November 3, 2013 at 3:42pm — 1 Comment

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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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