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Phyllis Ann Talbot commented on Nicolas's video
aHUS by Lou Anne
Linda Burke commented on Nicolas's videoaHUS by Lou Anne
Nicolas posted a videoSHUa aHUS by Lou Anne
Linda Burke commented on Nicolas's video
A Rare One By Lou Anne
Linda Burke commented on Nicolas's blog post Soliris Authorization in Europe for Treatment of Patients with aHUS
Cheryl Biermann commented on Nicolas's blog post Soliris Authorization in Europe for Treatment of Patients with aHUSNicolas posted a blog postSoliris Authorization in Europe for Treatment of Patients with aHUS
Len Woodward commented on Nicolas's blog post AIRG-FranceNicolas commented on Nicolas's blog post AIRG-FranceLen Woodward commented on Nicolas's blog post AIRG-FranceProfile Information
- Birthday
- December 19
- 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:
- C3 (C3)
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Nicolas's Blog
Soliris Authorization in Europe for Treatment of Patients with aHUS
The SOLIRIS is finally approved in Europe to treat aHUS.
The Authorization for the Marketing of today.
First major victory in the logical result of the FDA approval.
It remains to decline the authorization in European member states to support repayments by the agencies.
Check out the article Alexion's page : http://www.alxn.com/News/article.aspx?relid=627659
Posted on November 29, 2011 at 3:45pm — 2 Comments
October : News from France
Our daughter has changed. She grew up. She wakes in the… Continue
Posted on October 9, 2011 at 2:18pm — 5 Comments
Grafted 15 days there
We returned at home this weekend. It's a new life, a new birth. No more dialysis, preparations, connection, disconnection ... 1 hour and a half we have available in our schedule. Unbelievable. Lou-Anne is going superbly. It devours. Although it continues to urinate, so that the layers are not enough night. She has to learn. It does piss over her since the age of 1 year. What happiness! I wish us all to know that.
She had her injection of Soliris Friday before going out. She does not…
Posted on August 1, 2011 at 3:05am — 6 Comments
Lou-Anne / News from France
At 10 days, all is well. The three injections of Soliris are not raised worries. No side effects. Good renal function and blood work normal complement.
This long-awaited moment has finally arrived. What happiness! One week intense emotions, stress and anxiety.
We were on a driving holiday when we call for the transplant. Half turn. We were in the center of… Continue
Posted on July 26, 2011 at 10:04am — 2 Comments
Comment Wall (8 comments)
- At 11:46pm on July 31, 2011, Linda Burke said…
- I hope that Lou-Anne is feeling stronger and happier with each passing day - would love an update when you have time. All the best, Linda
- At 3:48pm on November 29, 2010, Candis Cook said…
- Hi there! My oldest daughter is now on soliris. She recently needed to be on life support for a second time due to a severe flare up. She developed severe angioedema and was the first to do this. She is home now and doing better however the doctors have not seen anyone have such severe flare ups of this disease. She is being fallowed by the nephrology team at stanford university, primarily Dr. Wong and Dr. Alexander. I hope your daughter is doing well.
- At 10:31pm on November 18, 2010, Linda Burke said…
- Bonjour du Maine! Je voulais juste vous faire savoir que je suis aller de l'avant avec la NORD / Eurordis initiative de créer une communauté mondiale aHUS en ligne. Les deux organisations, et je les détails ont examiné aujourd'hui, et je suis en train de les aider à affiner leurs paramètres du projet - cela peut prendre un peu plus de travail, mais c'est bon train. Je ne manquerai pas de vous tenir informé de ses progrès.
(Thank you, Google translator!)
- At 12:24am on November 6, 2010,
Svetlana Finley said… - Welcome here!!! Love your picture!!!! My daughter Anna is 12 yr. old ;-)
- At 12:01am on November 6, 2010, Linda Burke said…
- Love the profile photo...Lou-Anne is adorable!!
- At 5:39pm on November 5, 2010, Cheryl Biermann said…
- Hello Nicolas! It is wonderful to welcome you here, our son, Nathan was diagnosed at 11 months, at seven he became a peritoneal dialysis patient and at 9 is now a hemo dialysis patient. We look forward to hearing your family's story and hope we may be of assistance to you.
- At 4:25pm on November 5, 2010,
Jodi Kayler said… - Welcome Nicolas! We are happy you found this website. My son, was diagnosed at 11months and is now 7. Let us know if we can be any assistance.
- At 11:59pm on November 4, 2010, Linda Burke said…
- Bienvenue! Please join me in welcoming Nicolas, Dad to a 5 year old daughter diagnosed at 10 months of age with atypical HUS and currently on dialysis. We hope to welcome other aHUS patients/families from AIRG-France, a wonderful organization that serves as a linking hub for all genetic kidney diseases, supporting information, outreach, and renal genetics research.
Their link: http://www.airg-france.org:80/airg_accueil.htm
We look forward to connecting all aHUS families globally to share information and insight, and look forward to the new online rare disease community initiative of NORD and EURODIS. (We'll add a blog regarding that as more information becomes available.)
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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Did you know...
• • • • • • • • • • • •
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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