The Foundation for Children with Atypical HUS

Members

  • William Yadusky
  • Svetlana Finley
  • Jodi Kayler
  • Cheryl Biermann
  • Phyllis Ann Talbot
  • Joy Lewis
  • Grace
  • Linda Burke
  • Kerri Grey
  • sally rakes
  • Jooste Vermeulen
  • Melissa Hearn
  • NATALIE WALLACE
  • deborah deffenbaugh
  • Beat and Ruth Schenk
  • Candace Mulcahy

DOC To DOC - Registry

Sharing the Expertise-
our 'Doc to Doc Registry'


Physicians wishing to connect with other doctors experienced with the complexities of aHUS' multiple issues and presentations may contact:


Patrick Brophy, MD
University of Iowa
Pediatric Nephrology, Dialysis & Transplantation
Office: (319) 384-3090
Fax: (319) 384-3050
Iowa City, Iowa
aHUS interests: diagnosis and ongoing care of multiple patients, dialysis issues, and transplantation

Stuart Goldstein, MD
Pediatric Nephrology
Texas Children's Hospital: Attending Physician, Renal Service:
Medical Director, Renal Dialysis Unit
Houston, Texas
Ph: (832) 824-3363
Fax: (832) 825-3889
renalcenter@ texaschildrenshospital.org
aHUS interests: long-term (10yrs+)PD dialysis, hemodialysis, growth issues/growth hormone

Matt Hand, DO
Carrie Gordon, MD

Maine Medical Partners Pediatric Specialty Care (Nephrology)
Office: (207) 662-5522
Fax: (207) 662-5526
Portland, Maine
The Barbara Bush Children's Hospital at Maine Medical Center
aHUS interests: multiple aHUS patients, Soliris, dual organ transplant, TRALI incidence with plasmapheresis

Joel Hernandez, MD
Pediatric Nephrology
Sacred Heart Children's Hospital
Spokane, Washington
Office: (509) 474-5445
aHUS interests: multiple aHUS patients, Soliris

Christoph Licht, MD, FASN
Asst. Professor of Paediatrics
Division of Nephrology
The Hospital for Sick Children
Toronto, Canada
Tel: +1 416 813 7654 x 2058
Fax: +1 416 813 6271
email: christoph.licht@sickkids.ca
aHUS interest: research focused on complement-based renal diseases

Julius Sherwinter, MD
Dunwoody Pediatrics (Nephrology) and the Children's Kidney Center
Office: (770) 394-3458
Atlanta, Georgia
Chief Pediatric Nephrology
Associate Clinical Professor
Children's Healthcare of Atlanta
aHUS interests: infants and Soliris


We deeply appreciate the generosity of the physicians above, who have graciously volunteered to share their aHUS expertise and experiences. We extend a warm welcome to all physicians or researchers with aHUS case experiences; doctors wishing to add their contact information to this 'Doc to Doc' registry may notify linda@atypicalhus.org

Parents, please have your child's doctor utilize the physician contact data above if you feel your child would benefit from a 'doc to doc' consultation.



The Atypical HUS CONFERENCE was held on
Oct. 17th, 2009 at the University of Iowa.
Our deepest appreciation for the outstanding efforts of the University of Iowa doctors and lab staff, who enlighted us with information as they created a meaningful and supportive environment for connecting research and aHUS families. We especially appreciate the courtesy extended to aHUS families and their physcians in regard to sharing the information presented at the Oct. 17, 2009 aHUS Conference.

Conference information has been edited and presentation Powerpoints are available to Members of this website and to physicians dealing with aHUS patients .Please contact the director of the Foundation for Children with Atypical HUS, Bill Biermann, via his Member page on this website, to request aHUS Conference Presentations.

Latest Activity

So, Coen, just a week behind Skyler, also continues to have positive labs (11 mos on Soliris) HCT 41.5 Creatinine 1.45 PLT 231 BUN 63 This is the highest his HCT has ever been and this month his Epogen has been reduced twice! Whoohoo! Also, we had…
4 hours ago
My heart breaks each time there is someone diagnosed with this awful disease. I offer you my hopes and prayers that things will get better
10 hours ago
Jessica had been on norvasc, a catapress patch and when her pressures rose above 140/90 I had to give her a quick acting sublingual med propananol. She was on this combo for a number of years early on. Norvasc is pretty strong and many a time she wa…
10 hours ago
10 hours ago
10 hours ago
William Yadusky updated their profile
16 hours ago
That really pisses me off! Uh oh, did I say that out loud;) You must have a better kidney out there waiting for you because we all know you deserve it! Good luck Jessica and I will keep you in our prayers.
18 hours ago
Cheryl Biermann updated their profile
19 hours ago
Cheryl Biermann and sally rakes are now friends
20 hours ago
Thanks for the support everyone! Things are getting better, little by little each day. I tend to do things to keep my mind off of the situation, such as going to my preceptorship and taking care of those animals that are in need, that look to me to…
20 hours ago
21 hours ago
21 hours ago

Forum

Linda Burke

Soliris 165 Replies

Started by Linda Burke in Soliris. Last reply by Jodi Kayler 4 hours ago.

Cheryl Biermann

Fund Raising Basics UNDER CONSTRUCTION!

Started by Cheryl Biermann in Uncategorized. Last reply by Cheryl Biermann 8 hours ago.

Cheryl Biermann

Tell me two Fun things - (No Serious talk allowed !!) 11 Replies

Started by Cheryl Biermann in Uncategorized. Last reply by Cheryl Biermann 1 day ago.

maria vicenta carratala rios

Soliris reduce the high bllod preasure ? 2 Replies

Started by maria vicenta carratala rios in Soliris. Last reply by Linda Burke Mar 8.

Kamal D Shah

Is this aHUS? 3 Replies

Started by Kamal D Shah in Uncategorized. Last reply by Cheryl Biermann Mar 1.

 

Photos

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Blog Posts

Jessica Olivia Frysz

Happiness is over

A month ago I had an individaul come to me offering to donate a kidney transplant. Last night at the time of 8:38pm, I get a phone call with a laughing tone on the other end, telling me that he is going back to his ex to get married and that I am not to receive his kidney. This brought my hope level up and now I'm hurt, and have dealt with disappointment long enough. I'm ready to find a donor, or just accept a deceased kidney at this point, to be honest. It seems like as my hope goes up, my c

Continue

Posted by Jessica Olivia Frysz on March 9, 2010 at 12:54pm — 7 Comments

sally rakes

My beautiful Daughter Destiny

In Nov of 2009 got sick. I thought it was the flu we went to the hospital and she was admitted on the18th to the ICU at St. Frances Children Hospital we were there for 3 weeks they then sent us to OU's Children's hospital. We got there on Dec 9th 2009, and left on Jan 15th 2010. While we were there we were in the ICU twice because of the blood pressures she got as high as 186/132 she had a stroke and lost her vision for awhile (still has someContinue

Posted by sally rakes on March 8, 2010 at 5:53pm — 6 Comments

Phyllis Ann Talbot

What a week - and BP meds help

OK - here's the latest carepage update - and hopefully the last one until our next clinic - I do have a question for all of you out there that have had nephrectomy's - one thing I had not been told prior to Hyde's nephrectomy was that a couple of his meds would no longer work since his kidney's were removed (would have been nice to know before - but oh well). They have taken him off his Cozaar and Captopril. Right now he's on Norvasc (amlodipine) and Atenolol (this as
Continue

Posted by Phyllis Ann Talbot on March 5, 2010 at 2:48pm — 7 Comments

Svetlana Finley

Anna is home and her line is out ;-)

In last two weeks Anna been having problems with her central line untill last weekend it was really started getting more worse. I had to pick up Anna from school on Monday and take her to Doernbecher hospital, for check up and culture of her line. On Tuesday morning Anna went to school and stayed there untill she was done with her school. During lunch time i received call from Anna's doctor telling me that she has STAFF infection and that they need to admit Anna and remove line on next day. I wa… Continue

Posted by Svetlana Finley on March 5, 2010 at 9:46am — 5 Comments

Amy Swarbrick

Holding Strong

Hey everybody,


Been awhile since I've updated on my Brody man so I thought I would just leave a short note and a hello. Sorry Phyllis to break your blog run:)


We saw Brody's nephrologist today, things are looking good for Brody's kidneys. Dr. thinks they have recovered 100% from his occurance almost a year ago (March 6). Brody has been sick with colds or viruses on and off for the last couple of months thanks to his big sissy who started preschool this year. He seems to be holdi

Continue

Posted by Amy Swarbrick on March 5, 2010 at 1:48am — 6 Comments

Phyllis Ann Talbot

WE'RE HOME


Yippee!!! We got home a few minutes ago and Hyde's sleeping on the sofa! Sorry i didn't update earlier but we had kind of a rough evening/night/morning with blood pressure, itching, and pain for Hyde - so didn't want to jinx anything until we were on the way home. Hyde didn't get too much sleep last night - think the rash and the surgery finally caught up with him and he was fussing pretty much every 5 min or so but seems better today -


Continue

Posted by Phyllis Ann Talbot on March 4, 2010 at 4:09pm — 4 Comments

 
 
WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 "About aHUS" tab 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 2010 genetic testing and treatment.

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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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