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Sheila Burr
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- Lone Tree, IA
- United States
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Sheila Burr left a comment for Bill Biermann
Bill,
Thank you so much for all you and everyone did to make the conference possible! It is so enlightening to meet others and share our trials, joys and hardships we've all had in dealing with these same problems. The conference was great Rich…
Linda Burke left a comment for Sheila Burr
Now that we've had our "meet and greet" opportunity at the Iowa conference on 10/18/09, I'm looking forward to continuing our chat online here. It would be great to see some pictures of your daughter and to hear your…
Bill Biermann left a comment for Sheila Burr
It was so nice meeting you at the conference, thank you for commig. I hope the information was useful for your sitation, stay tuned!
Sheila Burr updated their profile
Linda Burke left a comment for Sheila Burr
Greetings, Sheila!
Welcome to the interactive social network for the Foundation for Children with atypical HUS. It gives us a chance to gain insight and information as we support others who share a diagnosis of aHUS. My family's story with…
Profile Information
- Birthday
- September 4
- Do you have a friend or family member diagnosed with aHUS?
- Yes
Comment Wall (3 comments)
- At 8:01pm on October 18, 2009,
Linda Burke said…
- Now that we've had our "meet and greet" opportunity at the Iowa conference on 10/18/09, I'm looking forward to continuing our chat online here. It would be great to see some pictures of your daughter and to hear your family's story!
- At 11:43pm on October 17, 2009,
Bill Biermann said…
- It was so nice meeting you at the conference, thank you for commig. I hope the information was useful for your sitation, stay tuned!
- At 10:19pm on June 15, 2009,
Linda Burke said…
- Greetings, Sheila!
Welcome to the interactive social network for the Foundation for Children with atypical HUS. It gives us a chance to gain insight and information as we support others who share a diagnosis of aHUS. My family's story with Hunter and Skyler is posted on this website, but we look forward to hearing an update on your family as well. If you have been in touch with other aHUS families, please invite them to this website. I hope you find inspiration and support as you scan this newly launched site, and we look forward to hearing Kaylin's story. Best, Linda
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.
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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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