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Anne Graftiaux
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Latest Activity
Anne Graftiaux left a comment for Linda Burke"Thank you for your welcome Linda ans sorry for my english!
Yes the picture is our daugther Marie, died last january at 13 years old, after 9 years of dialysis. I has been the président of AIRG France and I'm a friend of Nicolas. With him…"
Nicolas left a comment for Anne Graftiaux"Bonjour Anne,
Merci d'avoir rejoint le groupe. Ensemble nous serons encore plus nombreux.
Et tu verras, l'accueil américain est formidable.
Thank you for joining the group. Together we will be even more many.
And you'll see,…"
Linda Burke left a comment for Anne Graftiaux"Is this beautiful photo that of your daughter Marie? You must miss her so much.... We lost our little boy Hunter during an attempted kidney/liver transplant in May 2008, and remember his sweet smile every day. Sending you best wishes, Linda"
Linda Burke left a comment for Anne Graftiaux"Bonjour Anne, and thank you for all your work on behalf of the aHUS patients and families in France!"
Profile Information
- Birthday
- October 12
- 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?
- Yes
- My child ( or myself as a patient) is best described as:
- Factor I (CFI), Factor B (CFB)
Comment Wall (3 comments)
- At 3:51am on November 28, 2010, Nicolas said…
- Bonjour Anne,
Merci d'avoir rejoint le groupe. Ensemble nous serons encore plus nombreux.
Et tu verras, l'accueil américain est formidable.
Thank you for joining the group. Together we will be even more many.
And you'll see, the American welcome is great.
Nicolas
- At 10:25pm on November 27, 2010, Linda Burke said…
- Is this beautiful photo that of your daughter Marie? You must miss her so much.... We lost our little boy Hunter during an attempted kidney/liver transplant in May 2008, and remember his sweet smile every day. Sending you best wishes, Linda
- At 11:00am on November 27, 2010, Linda Burke said…
- Bonjour Anne, and thank you for all your work on behalf of the aHUS patients and families in France!
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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