"The process is to speak with Ian's doctors; provide them with the information regarding Soliris and transplant, which you can find here under Joy Lewis's forum...then usually your team of doctors will speak with the transplant team and…"
Peter Brown's Page
Latest Activity
"Peter-
I too have had this idea discussed also, as a transplant protocol treatment. I have factor H mutation, and haven't been able to keep an organ for more than 9 days and was taken off of the donor list in 1999 and just now am able to get…"
KaTrina Slaughter left a comment for Peter Brown"Hi Peter!
I just wanted to get your thoughts on the Children's Hospital in Boston. We are bringing our daughter up there next week to meet with the liver and kidney transplant teams. Feel free to email me, if you don't want your thoughts…"
Peter Brown left a comment for Cheryl Biermann"Hi Cheryl,
I know from searching on the internet for the past few years that you and Bill have worked very hard to share information about AHUS, and to organize this community. THANK YOU for all that effort. Yes, I am interested in the protocols…"
Cheryl Biermann commented on Peter Brown's blog post Planning transplant using Soliris?"Hello everyone-I guess some people have missed the news that there HAVE been transplants with Eculizumab! Anyone interested please contact me via the send a message, it's a lot of info, we knew of tranplants with Eculizumab in Europe and just…"
Deborah Deffenbaugh commented on Peter Brown's blog post Planning transplant using Soliris?"Hi Peter--My daughter, Alyssa was diagnosed with a-HUS in January 2009 when she was 21. She has a factor I defect that might be the culprit but the defect has not been identified before with a-HUS. She also has a thrombomoduline defect that one…"
Cheryl Biermann commented on Peter Brown's blog post Planning transplant using Soliris?"Hi Peter,
We're joining the discussion a little bit later than everyone else, computer problems, which are hopefully resolved!
Our son Nathan is 10, he struggled with constant relapses, many of which threatened his life, until at age 5, we…"
Peter Brown commented on Peter Brown's blog post Planning transplant using Soliris?"Wonderful to hear from everyone!
Jodi, it is great to hear how effective the Soliris has been for Coen and how confident you feel about its use going forward. You must be so relieved to be off the plasmapheresis treadmill. Ian had pheresis…"
Jodi Kayler commented on Peter Brown's blog post Planning transplant using Soliris?"Hi Peter, Welcome. My 7 year old son, Coen has been on Soliris for 1.5 years and currently receives Soliris infusions once a month. We began Soliris after 300-400 plasmapheresis treatments and 5 years of constant HUS activity and relapses. He has…"
Dana M Simone commented on Peter Brown's blog post Planning transplant using Soliris?"Hi Peter...our son Jack, 17, is a dialysis patient at MGH...he was diagnosed with Atypical HUS in 2007 and has been on PD for 3 1/2 years. We are discussing a transplant and the protocol will definitely include use of Soliris. It's been…"
Ethan Ardoin commented on Peter Brown's blog post Planning transplant using Soliris?"Hello Peter, Our 12 year old son, Ethan, has Factor H mutation. He was diagnosed at 7 months old and has had two transplants. He is on PD now (going on 5 years) We, too, are very interested in this process. Ethan is doing well right now, so we are…"
Phyllis Ann Talbot commented on Peter Brown's blog post Planning transplant using Soliris?"Hi there Peter - my name is Phyllis and our son Hyde just turned 4 and has been on PD since June of 2008 and has a Factor H mutation. We are actually in the process of pursuing a kidney transplant along with Eculizimab as we speak - I'd be…"
Peter Brown posted a blog postPlanning transplant using Soliris?
Our fourteen year old son Ian, is a dialysis patient at Childern's Hospital In Boston. He was first diagnosed with AHUS in 2000, and received a kidney transplant in 2002. However the HUS recurred within two months of transplant. Since then Ian has been on PD, and for the last three and a half years on Hemodialysis. He has complement factor I and MCP mutations.The prospects that Eculizumab (Soliris) offers are very exciting to our family, as they must be to many others with AHUS. Ian's doctors…See More
Cheryl Biermann left a comment for Peter Brown"Hi Peter!
Welcome to our interactive website, feel free to join in the discussions, we look forward to hearing from you."
Profile Information
- Birthday
- May 2
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Factor I (CFI), MCP (MCP/CD 46)
Peter Brown's Blog
Planning transplant using Soliris?
Our fourteen year old son Ian, is a dialysis patient at Childern's Hospital In Boston. He was first diagnosed with AHUS in 2000, and received a kidney transplant in 2002. However the HUS recurred within two months of transplant. Since then Ian has been on PD, and for the last three and a half years on Hemodialysis. He has complement factor I and MCP mutations.
The prospects that Eculizumab (Soliris) offers are very exciting to our family, as they must be to many others with AHUS. Ian's… Continue
The prospects that Eculizumab (Soliris) offers are very exciting to our family, as they must be to many others with AHUS. Ian's… Continue
Posted on September 15, 2010 at 10:07pm — 10 Comments
Comment Wall (3 comments)
- At 3:13pm on September 22, 2010, KaTrina Slaughter said…
- Hi Peter!
I just wanted to get your thoughts on the Children's Hospital in Boston. We are bringing our daughter up there next week to meet with the liver and kidney transplant teams. Feel free to email me, if you don't want your thoughts made public. :) tsallis_98@yahoo.com
- At 11:47am on September 15, 2010, Cheryl Biermann said…
- Hi Peter!
Welcome to our interactive website, feel free to join in the discussions, we look forward to hearing from you.
- At 10:15pm on September 14, 2010,
Linda Burke said… - Hi Peter,
Welcome to the interactive website of the Foundation for Children with Atypical HUS, we look forward to hearing your family's story.
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.
************************
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.
Badge
© 2012 Created by ALPHA MARKETING.
Powered by 
.
