Riley Brewer's Page
Latest Activity
lisa ann peterson left a comment for Riley Brewer" i was just curious how your lil one was doing??? i hope that all is going well..."
lisa ann peterson left a comment for Riley Brewer"Dr h is great he will take the best care of ur little boy I know from experience Ian so sorry u guys have to deal with AHUS but they have been working with Chloe for almost three years and the team of docs is phenomenal.. Please u guys feel free to…"
Linda Burke left a comment for Riley Brewer"You're in great hands with Dr. Hernandez.....wishing you the best, Linda"
Riley Brewer left a comment for lisa ann peterson"Hi Lisa, thanks for the comment. I'd never heard of aHUS before last Saturday. Dr. Hernandez has been fantastic and we're learning fast. We are at Sacred Heart waiting for the surgeon to finish inserting a catheter for dialysis. It's…"
lisa ann peterson left a comment for Riley Brewer"U are very close to us we live in Okanogan.. Welcome to this site it's been a god send for us"
Linda Burke left a comment for Riley Brewer"As a parent of a newly diagnosed child, we hope you will find the 'aHUS Bootcamp' tab at the top of this page to be helpful. Please let us know how we can support you at this time, whether through specific questions or reference…"
Profile Information
- Birthday
- January 1
- 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 Awaiting Results
Riley Brewer's Photos
Comment Wall (5 comments)
- At 7:37pm on February 14, 2011, lisa ann peterson said…
- i was just curious how your lil one was doing??? i hope that all is going well...
- At 11:31pm on January 22, 2011, lisa ann peterson said…
- Dr h is great he will take the best care of ur little boy I know from experience Ian so sorry u guys have to deal with AHUS but they have been working with Chloe for almost three years and the team of docs is phenomenal.. Please u guys feel free to call me if u need to vent or anything I've walked it.. So have all of these parents and they r so helpful and smart.. 509-322-6123 god bless
- At 10:50pm on January 22, 2011, Linda Burke said…
- You're in great hands with Dr. Hernandez.....wishing you the best, Linda
- At 6:57pm on January 21, 2011, lisa ann peterson said…
- U are very close to us we live in Okanogan.. Welcome to this site it's been a god send for us
- At 10:55am on January 20, 2011, Linda Burke said…
- As a parent of a newly diagnosed child, we hope you will find the 'aHUS Bootcamp' tab at the top of this page to be helpful. Please let us know how we can support you at this time, whether through specific questions or reference resources.
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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