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Darren Frost
- Male
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- United Kingdom
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Darren Frost's Page
Latest Activity
Cheryl Biermann left a comment for Darren Frost"Hello Darren,
Welcome to the web-site. We look forward to hearing your comments, ect. Please feel free to add or join and of the discussions."
Linda Burke left a comment for Darren Frost"Hi Darren,
Thanks for joining, and for actively supporting our aHUS community in the UK....great that you attended Dr. Goodship's recent aHUS family conference in Newcastle.
…"
Profile Information
- Birthday
- December 28
- 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 business interests
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene)
Comment Wall (2 comments)
- At 8:00am on July 2, 2011, Cheryl Biermann said…
Hello Darren,
Welcome to the web-site. We look forward to hearing your comments, ect. Please feel free to add or join and of the discussions.
- At 11:24pm on July 1, 2011, Linda Burke said…
Hi Darren,
Thanks for joining, and for actively supporting our aHUS community in the UK....great that you attended Dr. Goodship's recent aHUS family conference in Newcastle.
You're most welcome to start a Forum here to specialize in issues facing aHUS patients in the UK. While most would be similar to the US, differences in your heathcare systems and hospital situations might be valuable discussion points. Feel free to explore, post comments, and ask questions!
I am interested in contributing however i can. If interested i do have a band who would be willing to play (free of charge of course) in any fund raising ideas that may take place in the south west.
Many thanks
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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