"HI Kay the next meeting is in London on 10th of September"
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KAY YEOWART
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debbie thelwell left a comment for KAY YEOWART"Hi Kay, no we havent heard anything as of yet we where worried we might of missed something. We found the conference really useful it answered alot of questions and gave us hope for the future. How about you?"
KAY YEOWART left a comment for debbie thelwell"Hello, Yes it was me. Have you heard any more since the conference? We haven't but maybe we have missed something. Hope all is well with you."
debbie thelwell left a comment for KAY YEOWART"Hi Kay im not sure if it ws you i was sat next to at the conference with your husband had you lost several children to the illness"
KAY YEOWART is attending Linda Burke's eventaHUS Conference for Patients and Families- a UK First at Newcastle upon Tyne - UK, Center for Life,
June 11, 2011 from 10:30am to 4:30pm
Join Dr. Tim Goodship at Newcastle upon Tyne for the UK's 1st Atypical HUS Conference on June 11, 2011. Details at www.aHUS.org.uk .The Center for Life (A Centre for World-Class Science) is the conference site, where from 10.30 to 16.30 conference attendees will learn about the disease and discuss aHUS issues. Topics at this Saturday conference at Newcastle upon Tyne include: aHUS treatments, transplants, Soliris, and a disease registry.Registration and…See More
KAY YEOWART commented on Linda Burke's blog post Dr Goodship announces 1st aHUS Patient-Family Conference in UK"We hope to attend, thank you for letting us know about this important event."
Linda Burke left a comment for KAY YEOWART"Hi Kay,
It was with sadness that I read of your family's great losses due to aHUS, yet glimmers of hope for new treatments are beginning to be on the horizon for aHUS patients. I hope that our family stories and the information on this…"
Profile Information
- Birthday
- June 6
- 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.
- NO
- My child ( or myself as a patient) is best described as:
- Tested but Results are Inconclusive
Comment Wall (4 comments)
- At 6:26pm on August 6, 2011, debbie thelwell said…
- HI Kay the next meeting is in London on 10th of September
- At 5:10am on July 16, 2011, debbie thelwell said…
- Hi Kay, no we havent heard anything as of yet we where worried we might of missed something. We found the conference really useful it answered alot of questions and gave us hope for the future. How about you?
- At 6:42pm on July 15, 2011, debbie thelwell said…
- Hi Kay im not sure if it ws you i was sat next to at the conference with your husband had you lost several children to the illness
- At 10:56pm on February 2, 2011, Linda Burke said…
Hi Kay,
It was with sadness that I read of your family's great losses due to aHUS, yet glimmers of hope for new treatments are beginning to be on the horizon for aHUS patients. I hope that our family stories and the information on this website give you an overview of aHUS for this online community. People here are quick to offer insight and support - we welcome you here and hope this website is a useful resource for you.
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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