"I cannot add anything further to the discussion except to say that Nathan has had issues from the…"
DOC To DOC - Directory
Sharing the Expertise-
our 'Doc to Doc Directory'
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
U of Iowa Heath Care
(319) 356-7249
Iowa City, Iowa
patrick-brophy@uiowa.edu
aHUS interests: diagnosis and ongoing care of multiple patients, dialysis issues, and transplantation (renal transplant with Soliris)
Stuart Goldstein, MD
University of Cincinnati College of Medicine
Division of Nephrology and Hypertension &
The Heart Institute
Director, Center for Acute Care Nephrology
Cincinnati Children's Hospital Medical Center
3333 Burnet Avenue
MLC 7022
Cincinnati, Ohio 45229
Phone: 513-636-2209
Fax: 513-636-7407
E-mail: stuart.goldstein@cchmc.org
aHUS interests: long-term (10yrs+)PD dialysis, hemodialysis, growth issues/growth hormone
Carrie Gordon, MD
Oliver Fremont, 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, FRCPC, FASN
Associate Professor of Paediatrics
Division of Nephrology
The Hospital for Sick Children
555 University Avenue
Toronto, ON, M5G 1X8, Canada
Tel. +1 416 813 7654 x 2058
Fax. +1 416 813 6271
Email. christoph.licht@sickkids.ca
aHUS interests: research focused on complement-based renal diseases
Carla M. Nester, MD
University of Iowa
Pediatric Nephrology, Dialysis & Transplantation
Office: (319) 353-7335
Fax: (319) 384-9616
U of Iowa Heath Care
(319) 356-1616
Iowa City, Iowa
carla-nester@uiowa.edu
aHUS Interests: diagnosis and ongoing care of both adult and pediatric patients, including the use of eculizumab and transplantation (renal transplant with Soliris)
Jeffrey M. Saland, MD, MSCR Interim Chief of Nephrology, Assistant Professor of Pediatrics
Mount Sinai School of Medicine NewYork, NY 10029
Office: (212) 241-6187
Fax: (212) 426-1972
aHUS interests: Recognition and Initial Management, single or combined liver/kidney transplants
Amita Sharma, MD
Clinical Director
Division of Pediatric Nephrology
Massachusetts General Hospital for Children
E-mail: asharma5@partners.org
aHUS interests: transplant with Soliris
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
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Regarding Soliris
Patients, Physicians, and Parents may contact the Medical Information Department of Alexion Pharmaceuticals, Inc at 1.888.SOLIRIS (765-4747)
Technical infomation about Soliris is available in our Forum 'How Soliris Works' courtesy of www.rxlist.com
'c5 Functional Assay' information is available through:
*Mayo Clinic
mayomedicallaboratories.com
Test Number: Unit Code 83392
1-800-533-1710
*National Jewish Hospital
1-800-550-6227 or 303-398-1541
Physicians formulating letters seeking insurance coverage of Soliris therapy to maintain aHUS patient's renal grafts can request the Foundation's helpful template. Please email linda@atypicalhus.org with your office/hospital contact info.
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.
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The Atypical HUS CONFERENCE was held on
Oct. 8th, 2011 at the University of Iowa.
We've shared the latest in aHUS research and information, presented by top investigators and clinician wiith video of presentations from this aHUS family conference.
Click below to
VIEW IOWA VIDEOS
FMI- Please contact the director of the Foundation for Children with Atypical HUS, Bill Biermann, via his Member page on this website or at bbiermann@premier-ks.com .
Links
NORD/Eurordis : see aHUS
PATIENT COMMUNITIES,
5 languages available at
http://www.rarediseasecommunities.org
Visit Children's Rare Disease Network
Latest Activity
Shiv posted a discussionSoliris insurance coverage
Hi All,My 7 year old nephew was diagnosed with aHUS in India a couple of weeks back. He has had 13…See More
Linda Burke commented on Diane schaller's blog post Stomach aches"Hi Diane,
Unfortunately, there have been other aHUS parents who have mentioned concerns about…"
Svetlana Finley commented on Diane schaller's blog post Stomach aches"HI Diane, Anna went thru stomach pains they couldn't figure it out what cause it, GI doctors…"
Diane schaller posted a blog postStomach aches
Our 8 year old daughter Devon was recently diagnosed with aHUS on March 5, 2012. She spent 5 weeks…See More
Svetlana Finley replied to Michele Haymes's discussion Anti Factor H Antibodies"Thanks for update!!! Glad to hear he finally get to swim and play sports. I think that is most…"
Forum
Soliris insurance coverage
Started by Shiv in Soliris on Monday.
Anti Factor H Antibodies 13 Replies
Started by Michele Haymes in Uncategorized. Last reply by Svetlana Finley May 9.
Soliris 281 Replies
Started by Linda Burke in Soliris. Last reply by Linda Burke May 5.
Check ups 1 Reply
Started by Lannette Yorgason in Soliris. Last reply by Svetlana Finley May 5.
Current research & presentations: for patients and healthcare providers 52 Replies
Started by Joy Lewis O'Brien in Uncategorized. Last reply by Joy Lewis O'Brien Apr 18.
Photos
Blog Posts
Stomach aches
Our 8 year old daughter Devon was recently diagnosed with aHUS on March 5, 2012. She spent 5 weeks at CHOC hospital in Orange County CA. It was an incredibly difficult time as you all could imagine. We feel very blessed that she was diagnosed within the first 24 hour and were/are thrilled with the nephrology and hematology teams. We are still waiting for blood test results to come back from Iowa. They originally told us it would take 6-8 weeks now they are telling us 3-4 months. Does it… Continue
Posted by Diane schaller on May 12, 2012 at 1:42pm — 3 Comments
Jack update
It's been a while!
Jack has been doing great - just finished his freshman year of college, is working part time, and best of all, back to playing b-ball with his friends:)
One glitch... His labs have shown increased levels of renin and aldosterone and he has new onset proteinuria. So, his doctor has decided that his native kidneys need to be removed. We kind of knew this was coming. Next week, Jack is scheduled for laparoscopic bilateral native nephrectomies. He'll be inpatient… Continue
Jack has been doing great - just finished his freshman year of college, is working part time, and best of all, back to playing b-ball with his friends:)
One glitch... His labs have shown increased levels of renin and aldosterone and he has new onset proteinuria. So, his doctor has decided that his native kidneys need to be removed. We kind of knew this was coming. Next week, Jack is scheduled for laparoscopic bilateral native nephrectomies. He'll be inpatient… Continue
Posted by Dana M Simone on May 8, 2012 at 5:57pm — 1 Comment
trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying! so we had nathan's kidney biopsied. we were tickled to find out we could stay in…
trying out the andriod, i'm not good with it as i actually know how to type and the one finger typing is annoying!
so we had nathan's kidney biopsied. we were tickled to find out we could stay in general care as this is the section of the hospital built in this century! a real bed not a chair and dvd player, not vhs, but of course we watched almost non stop river monsters. the biopsy went fine, butnit was a good thing to have an anthesiologist and not just sedation as he…
ContinuePosted by Cheryl Biermann on May 4, 2012 at 10:22pm — 3 Comments
Tummy Troubles
Brody had chronic diarrhea for a couple months now. It was to the point that the poor kid was having accidents in his pants at least once a day. He just turned four by the way and has been potty trained for awhile now. We had been to the doctor a couple times and did all the necessary blood tests related to any food allergies ect. Everything came back fine but we took him off dairy just in case. Several weeks went by and no improvement. The doctor's suggestion was to make a "diary" of when…
ContinuePosted by Amy Swarbrick on May 1, 2012 at 11:25pm — 2 Comments
Events
Videos
INFORMATIONAL Videos
Soliris® (eculizumab) Approved by FDA for All Patients with Atypical Hemolytic Uremic Syndrome (aHUS)
aHUS and Soliris FDA Approval -- Physician Comments
Larry Greenbaum, M.D. , Ph.D. - Director of Pediatric Nephrology at Emory University and Children's Healthcare of Atlanta
Craig B. Langman, M.D. - Professor of Kidney Diseases and Head of Kidney Diseases, Feinberg School of Medicine, Northwestern University
aHUS Families and Soliris FDA Approval -- Mary Dunkle, NORD
with Comments from: Phyllis Talbot, mother of an aHUS patient and
Bill Biermann, Co-Founder and Director of the Foundation for Children with aHUS
Genetics and aHUS Judith Goodship
Professor Goodship from Newcastle University has been interested in atypical HUS for nearly twenty years.
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 "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.
• • • • • • • • • • • •
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...
• • • • • • • • • • • •
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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