The Atypical HUS Foundation

Nicolas
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  • Delyana Sabeva Yordanova
  • Len Woodward
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  • Sharon Madrid
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  • Candis Cook
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  • Beat and Ruth Schenk
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  • Cheryl Biermann
  • Joy Lewis O'Brien
 

Nicolas's Page

Latest Activity

Jeff Schmidt commented on Nicolas's blog post Some news from France
"Nicolas, I always love seeing stories/pictures about Lou-Anne.  She is an amazing girl and you have an amazing family.  Lou-Anne's story is very inspirational and she has stolen my heart!  She is such a brave and strong girl!…"
Aug 8, 2015
Cheryl Biermann commented on Nicolas's blog post Some news from France
"Thank you for the update!  I know she's sick in the hospital right now, and I've been trying to get my computer to translate, but it's giving me fits!  She is certainly a beautiful child.  I pray the alliance brings…"
Jul 30, 2015
Delyana Sabeva Yordanova left a comment for Nicolas
"It is good to hear that, Nicolas. They really took a good care for my baby girl and now she is in a great condition. We are going back to Bulgaria soon and we are going to fly to Paris 2 times per month for my daughter to have the Soliris. For now…"
Jul 26, 2015
Nicolas posted a blog post

Some news from France

Lou-Anne is grafted for 4 years (july 15th). What a joy to have a little girl since grown normally and is in top form.We injections Soliris every 15 days at home and one every two months, in the hospital.Lou-Anne goes beautifully although we must remain vigilant during epidemic periods as in the winter.This injection, which has become the link with a "normal" life.We even have the opportunity to receive the injection in another hospital than Lille during our vacation.However, to reduce the…See More
Jul 26, 2015
Delyana Sabeva Yordanova and Nicolas are now friends
Jul 26, 2015
Nicolas left a comment for Delyana Sabeva Yordanova
"Hello, The hospital Robert Debré is where exercises of the best world experts, Professor LOIRAT. This child is in one of the best Hospitals which deals with aHUS. It's a great thing that supported France. We also have one of the best…"
Jul 26, 2015
Nicolas commented on Alyssa Deffenbaugh's video
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Rare Disease Day 2/29/2012- Alyssa's Story

"Wonderfull and thank you for this great video !"
Mar 1, 2012
Phyllis Ann Talbot commented on Nicolas's video
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aHUS by Lou Anne

"love this Nicolas!  Tried from my phone and couldn't get  it to work - GREAT job!  and what a doll in your Lou-Anne!"
Feb 29, 2012
Cheryl Biermann commented on Nicolas's video
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aHUS by Lou Anne

"This turned out really well, Nicolas, congratulations."
Feb 29, 2012
Linda Burke commented on Nicolas's video
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aHUS by Lou Anne

"WOW, Nicolas, and  thanks all our friends at AIRG, the French association devoted to rare kidney disease....and the star of the show, the beautiful princess Lou-Anne!"
Feb 28, 2012
Nicolas commented on Nicolas's video
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aHUS by Lou Anne

"Many thanks to Linda for her help in the translation."
Feb 28, 2012
Nicolas posted a video

SHUa aHUS by Lou Anne

Description du Syndrome Hémolytique et Urémique par Lou-Anne.Description of atypical hemolytic uremic syndrome by Lou-Anne.
Feb 28, 2012
Linda Burke commented on Nicolas's video
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A Rare One By Lou Anne

"Many aHUS patients and families can relate to these touching photos - thanks for sharing your family's story!"
Jan 29, 2012
Nicolas posted a video
Jan 28, 2012
Nicolas shared Linda Burke's blog post on Facebook
Jan 26, 2012
Linda Burke commented on Nicolas's blog post Soliris Authorization in Europe for Treatment of Patients with aHUS
"Hi Nicolas - A real milestone for aHUS patients in Europe since healthcare officials and insurers are now able to engage in conversation about coverage for aHUS patients wishing to use Soliris!  This is such important news!!"
Nov 29, 2011

Profile 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

Some news from France

Lou-Anne is grafted for 4 years (july 15th). What a joy to have a little girl since grown normally and is in top form.

We…

Continue

Posted on July 26, 2015 at 5:34am — 2 Comments

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

Lou-Anne is great. We have to put on register the second date of birth: July 15, 2011 .... That's incredible. She is like all other children. She is more tiring as before. Now it is we who get tired before her. It's wonderful. We have to make her post-transplant renal biopsy (here in France is 3 months). We await the results. Lou-Anne returned to school like other children on September 5. She loves and she is able to stay all day.

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…

Continue

Posted on August 1, 2011 at 3:05am — 6 Comments

Comment Wall (9 comments)

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At 6:07pm on July 26, 2015, Delyana Sabeva Yordanova said…

It is good to hear that, Nicolas. They really took a good care for my baby girl and now she is in a great condition.

We are going back to Bulgaria soon and we are going to fly to Paris 2 times per month for my daughter to have the Soliris. For now there is no other way for us.

It would be nice of you if you can tell me more about how you are doing with the IV infusion at home. Maybe there will be an opportunity for us to do so too.
I am glad to know your brave girl is doing great.
God bless you!
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.)
 
 
 

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