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Beat and Ruth Schenk
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Beat and Ruth Schenk's Page
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Nicolas left a comment for Beat and Ruth Schenk
Hello
Following my last post in French, I come to you in English. I am in France. Feel free to contact me. My daughter Lou-Anne (6 years) has a aHUS mutation on C3 since the age of 10 months. Best Regards.
Nicolas left a comment for Beat and Ruth Schenk
Bonjour,
Je viens de rejoindre la fondation il y a peu. Je découvre votre page.
Je suis en France. N'hésitez pas à me contacter.
Ma fille Lou-Anne (6 ans) a un SHUa sur mutation du C3 depuis l'age de 10…
Amy Swarbrick left a comment for Beat and Ruth Schenk
Hi Beat and Ruth,
My son Brody was diagnosed at 11 months, he is now almost 2. We just found out that my husband has the same factor H mutation as my son. We also have a four year old daughter that we are now worried about. I am so sorry that both…
Cheryl Biermann left a comment for Beat and Ruth Schenk
Oh they are so precious! Thanks for sharing their pictures. I'm so glad to have you here, like Linda, I'm curious how things are done elsewhere. Something that you may not know is that here we are able to have what are called dedicated…
Linda Burke left a comment for Beat and Ruth Schenk
Hi Beat and Ruth,
The photos are adorable, and it's great to hear that both are doing so well on FFP. It seems like quite a rocky path so far with both children being diagnosed so young - so uplifting to see the joyful twinkle in their eyes!…
Linda Burke commented on Beat and Ruth Schenk's photo
Wow - that must be so nice to only go in after 4 weeks. She has such a fabulous smile !
Linda Burke commented on Beat and Ruth Schenk's photo
Such a cutie ! Glad to hear he's doing well !
Linda Burke left a comment for Beat and Ruth Schenk
Hi Beat and Ruth,
Welcome to the interactive website of the Foundation for Children with Atypical HUS, where we share information, inspiration, and insight into this rare disease. If you are seeking detail medical information about aHUS, our main…
Heather Still left a comment for Beat and Ruth Schenk
Welcome to this wonderful website. We just got back from the foundation's parent conference in Iowa. We look forward to hearing more about your family and their aHUS story.
Cheryl Biermann left a comment for Beat and Ruth Schenk
It's so good to have you, welcome to our site, you have joined at a great time! We just had our parent conference in Iowa with our researchers, they had a lot of good things to share. Feel free to add to any discussions.
Profile Information
- Birthday
- September 29
- 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 H (CFH) /Protein (Gene)
Beat and Ruth Schenk's Photos
Comment Wall (12 comments)
- At 4:32pm on March 3, 2011,
Nicolas said…
Hello
Following my last post in French, I come to you in English.
I am in France. Feel free to contact me.
My daughter Lou-Anne (6 years) has a aHUS mutation on C3 since the age of 10 months.
Best Regards.
- At 4:21pm on November 28, 2010,
Nicolas said…
- Bonjour,
Je viens de rejoindre la fondation il y a peu. Je découvre votre page.
Je suis en France. N'hésitez pas à me contacter.
Ma fille Lou-Anne (6 ans) a un SHUa sur mutation du C3 depuis l'age de 10 mois.
Amicalement.
- At 11:57am on March 18, 2010,
Amy Swarbrick said…
- Hi Beat and Ruth,
My son Brody was diagnosed at 11 months, he is now almost 2. We just found out that my husband has the same factor H mutation as my son. We also have a four year old daughter that we are now worried about. I am so sorry that both of your children are affected by this disease...that is what I am so scared of the most. How old were Jana and Jason when they were diagnosed if you don't mind me asking? Welcome to the site!
- At 9:22am on November 5, 2009,
Svetlana Finley said… - You have adorable kids. I can't imagine have 2 kids with AHUS. Can't wait to hear your answers to Linda's and Cheryl questions ;-)
- At 12:21am on November 5, 2009,
Cheryl Biermann said…
- Oh they are so precious! Thanks for sharing their pictures. I'm so glad to have you here, like Linda, I'm curious how things are done elsewhere. Something that you may not know is that here we are able to have what are called dedicated doners. These are individuals who have to complete a comprehensive health questionaire on the safety of their blood. When they are deemed to be safe and have the correct blood type, their blood will be set aside and tagged for your children only. This not only provides a safe supply but also prevents them from acquiring tons of antibodies, which is important if they ever need a transplant. Just thought to mention it. thanks again for the adorable pictures.
- At 11:12pm on November 4, 2009,
Linda Burke said…
- Hi Beat and Ruth,
The photos are adorable, and it's great to hear that both are doing so well on FFP. It seems like quite a rocky path so far with both children being diagnosed so young - so uplifting to see the joyful twinkle in their eyes! When you have a few minutes to add your family's journey (and we all know how hard finding that time can be with two active children!) , I'd be interested in a few details about medical status in Switzerland for aHUS patients.
The U.S. decided to switch to male donor only FFP (just about complete) to avoid the rare but serious TRALI reactions - have the Swiss already put that blood supply safeguard in place? Some of us are using Soliris, produced by Alexion Pharmaceuticals, but the U.S. is just enrolling aHUS patients for upcoming clinical trials so it currently lacks our government's FDA approval for atypical HUS. Is Soliris available in Switzerland if you chose to use it? Is there a EU support group for aHUS families in place?
We're looking forward to sharing information and experiences as we all walk the same path. Best, Linda Burke
- At 10:49pm on October 18, 2009,
Lisa Goble said… - welcome to the site. May you find information to help make your journey smoother. :)
- At 8:19pm on October 18, 2009,
Linda Burke said…
- Hi Beat and Ruth,
Welcome to the interactive website of the Foundation for Children with Atypical HUS, where we share information, inspiration, and insight into this rare disease. If you are seeking detail medical information about aHUS, our main informational site is at www.atypicalhus.50megs.com and that link appears on this site's Home Page.
We have Forums that are topic specific, so if you have a particular interest area or concern you may want to check out the Forum sections. The website is fully searchable as well, with the search bar located right above the cute colored "Bubble Faces". We look forward to hearing your family's story and seeing some photos of Jana and Jason.
- At 7:30pm on October 18, 2009,
Heather Still said…
- Welcome to this wonderful website. We just got back from the foundation's parent conference in Iowa. We look forward to hearing more about your family and their aHUS story.
- At 7:24pm on October 18, 2009,
Cheryl Biermann said…
- It's so good to have you, welcome to our site, you have joined at a great time! We just had our parent conference in Iowa with our researchers, they had a lot of good things to share. Feel free to add to any discussions.
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 "About aHUS" tab 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
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