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Tracy MacIntyre
- Female
- Russell, Ontario
- Canada
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Tracy MacIntyre's Page
Profile Information
- Birthday
- December 25
- 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)
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 2010 genetic testing and treatment.
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 2010 genetic testing and treatment.
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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Comment Wall (7 comments)
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Join The Foundation for Children with Atypical HUS
I'm looking forward to discussing options with the Canadian continguigent. As mentioned in my last message to you, I can also be contacted at linda@atypicalhus.org. Let me know how I can help....
I was thinking of you on Feb 19th - how did your aHUS parent meeting go with Dr. Licht? Was there any interest in one of your group joining this website and creating a Canadian Forum with details specific to the provinces and the Canadian health care system? Looking forward to your participation....
I wanted to introduce myself and perhaps speak with you sometime in the near future.
My name is Tony Silva (Kitchener, ON) and my son passed away with AHUS a few year ago (he was 1 1/2). I've been in touch with Dr. Licht a few times but was unaware of a meeting that's taking place on Friday.
I'd be very interested in participating in any way and joining the Canadian arm of this foundation.
My number is 519 896-7760. Please let me know if and when i can give you a call.
Best regards,
Tony
Dr. Licht enjoys a most positive reputation - glad that you're working with someone of his caliber. We welcome all Canadians with an interest in aHUS to this site, and I've sent some specific ideas (via the private 'Send a Message' option) that detail how you might be able to tailor areas of this site to meet your groups' needs. Please free feel to invite the others in Dr. Licht's group to review this website and contact me in regard to an aHUS Canadian presence here.
I would like to thank you for reaching out to me. My daughter was one of the first patients in Canada diagonised with this disease 8 years ago and do due to the dedication of our doctors and their international contacts we were able to get genetic testing completed.
I am currently working with Dr. Licht from Sick Kids in Toronto, ON Canada, who is on your Doctor to Doctor page, in setting up a similar organization in Canada. Upon discussion with Dr. Licht we both agree that there is no point in duplicating work. Based on this realization I was wondering if someone from your organization could contact me with a potential of creating a Canadian arm if you are interesting.
I have reviewed most of your website and was pleased to see the discussions surrounding Solaris and the progress the kids have made on this drug.
I am meeting with other parents and Dr. Licht at Sick Kids on Feb. 19 to discuss the formation of our group. I look forward to hearing from you.
Welcome to the interactive site of The Foundation for Children with Atypical HUS, where we share information, inspiration, and insight about this rare disease. Since our goal is to help patients, family members, and researchers with a variety of aHUS interests, please let us know of areas/concerns dealing with aHUS topics. We appreciate your participation.