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rochelle greene
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- Gainesville, FL
- United States
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Linda Burke left a comment for rochelle greene
Hi Rochelle,
Thanks for adding Christopher's photo - dialysis conversations were pretty standard in our topics at the Iowa conference this weekend, so you are welcome to add your questions/comments to the Forum discussions. This site was…
Cheryl Biermann commented on rochelle greene's photo
Nice to meet you Christopher, we hope we can serve you and your family, we'd be glad to hear from you as well as the rest of your family.
Cheryl Biermann left a comment for rochelle greene
Welcome! Did you arrive at this site at a great time! We just had a parent conference din Iowa with our wonderful researchers, lots of information coming soon..feel free to share
rochelle greene updated their profile
Svetlana Finley left a comment for rochelle greene
HI, Welcome here ;-)
Linda Burke left a comment for rochelle greene
Hi Rochelle,
Thanks for joining us at this interactive website of the Foundation for Children with Atypical HUS. Feel free to explore your interest areas using the search bar above the cute colored "bubble faces", posting your comments…
rochelle greene updated their profile photo
Profile Information
- Birthday
- November 20
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) /Protein (Gene), C3 (C3)
rochelle greene's Photos
Comment Wall (4 comments)
- At 8:27pm on October 18, 2009,
Linda Burke said…
- Hi Rochelle,
Thanks for adding Christopher's photo - dialysis conversations were pretty standard in our topics at the Iowa conference this weekend, so you are welcome to add your questions/comments to the Forum discussions. This site was created as a place to share our stories and gain/give support through our shared experiences. I'm not sure if Christopher has looked at Jessica's page, but she's a young adult who has been on dialysis for 19 years and has an admirable can-do attitude - perhaps there are some similarities where they can support each other. Feel free to add more photos when you have time to share Christopher's story. Linda Greene Burke
- At 7:21pm on October 18, 2009,
Cheryl Biermann said…
- Welcome! Did you arrive at this site at a great time! We just had a parent conference din Iowa with our wonderful researchers, lots of information coming soon..feel free to share
- At 11:32pm on October 3, 2009,
Svetlana Finley said…
- HI, Welcome here ;-)
- At 11:16pm on October 3, 2009,
Linda Burke said…
- Hi Rochelle,
Thanks for joining us at this interactive website of the Foundation for Children with Atypical HUS. Feel free to explore your interest areas using the search bar above the cute colored "bubble faces", posting your comments and/or questions wherever the topic is meaningful to you and your family. My brother Steve Greene (ahem!! ;D) notes that this site's feature of being fully searchable would be very helpful to our new Members. Foundation director Bill Biermann has a great informational site for detailed aHUS info at www.atypicalhus.50meg.com if you haven't visited there before (see Links box on the Home Page).
We welcome you and look forward to hearing your story -
Best Wishes, Linda Greene Burke
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
For pearl bracelet orders, please allow extra time for processing checks.
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