"Hey Jan it is Ryan I am new to the site"
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Jan Mizikacioglu
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Latest Activity
Linda Burke left a comment for Jan Mizikacioglu"Hi Pierre,
Such a cute picture of Jan in the photo - I love his beaming smile! My family also shares the factor H mutation, as do several on the website. I wish I could update you with where everyone is…"
Cheryl Biermann left a comment for Jan Mizikacioglu"Welcome Jan! It is good to have you here, don't let the language barrier stop you, we'll muddle through somehow.
"
Linda Burke left a comment for Jan Mizikacioglu"Hello Jan,
I'm so glad to see you here - I'm sorry that Pierre had such difficulty joining aHUS community discussions but hope that he can add questions and comments now. Sending best wishes to Germany, and reminding you that the…"
Profile Information
- Birthday
- May 8
- 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 membership request involves business interests as I seek additional aHUS information for business applications.
- Privat
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Comment Wall (4 comments)
- At 6:50pm on July 16, 2011,
Ryan Still said… - Hey Jan it is Ryan I am new to the site
- At 11:53pm on March 22, 2011, Linda Burke said…
Hi Pierre,
Such a cute picture of Jan in the photo - I love his beaming smile! My family also shares the factor H mutation, as do several on the website. I wish I could update you with where everyone is regarding aHUS research, but most researchers with drugs in development closely monitor what information they release and when. Still, know that other aHUS parents are scanning news releases and business wires - we'll try to bring you any information on aHUS advances as it shows up in the literature or in media outlets.
- At 3:30pm on March 22, 2011, Cheryl Biermann said…
Welcome Jan! It is good to have you here, don't let the language barrier stop you, we'll muddle through somehow.
- At 12:10pm on March 22, 2011, Linda Burke said…
Hello Jan,
I'm so glad to see you here - I'm sorry that Pierre had such difficulty joining aHUS community discussions but hope that he can add questions and comments now. Sending best wishes to Germany, and reminding you that the Home Page has a "Links Box' that will take you directly to the NORD/Eurodis site which is able to translate aHUS info into German. You are most welcome to connect with the aHUS communities on both sites - I do!
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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