The Atypical HUS Foundation

Rebecca Redshaw
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  • Mount Vernon, WA
  • United States
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Rebecca Redshaw's Discussions

Soliris: Stop or Continue?
2 Replies

My sister has been on Soliris for several months and has shone marked improvement. A month ago she suffered a seizure that resulted in a hospital stay for more than a month and because of the…Continue

Started this discussion. Last reply by Rebecca Redshaw Apr 11, 2016.

 

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Latest Activity

Rebecca Redshaw replied to Rebecca Redshaw's discussion Soliris: Stop or Continue?
"Thanks for the quick response. Tough decisions but appointment has been made with the doctor before deciding anything."
Apr 11, 2016
Len Woodward replied to Rebecca Redshaw's discussion Soliris: Stop or Continue?
"Good advice already to talk to doctors . there is someone in Minesota who had a stroke ( not seizure )and is on eculizumab still. I am not a doctor but I have heard complement plays a part in repurfusion injury which follows a stroke, like it does a…"
Apr 11, 2016
Rebecca Redshaw posted a discussion

Soliris: Stop or Continue?

My sister has been on Soliris for several months and has shone marked improvement. A month ago she suffered a seizure that resulted in a hospital stay for more than a month and because of the hospital limitations the drug could not be administered. Her improvement from the seizure has been very successful (with intense rehab and therapy) and her cognitive awareness and general demeanor has markedly improved. Now the family (including my sister) is wondering should she restart Soliris and…See More
Apr 10, 2016
Linda Burke left a comment for Rebecca Redshaw
"Hi Rebecca, Thanks for being an active advocate for your sister - and we hope you find this site to be a source of information and support.  "
Jan 27, 2016
Rebecca Redshaw is now a member of The Atypical HUS Foundation
Jan 27, 2016

Profile Information

Birthday
May 27
Do you have a friend or family member diagnosed with aHUS?
Immediate Family
I am a caregiver for an aHUS patient
Yes: for an adult with aHUS
I am an adult aHUS patient.
No
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.
Journalist research
My child ( or myself as a patient) is best described as:
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At 10:35pm on January 27, 2016, Linda Burke said…

Hi Rebecca,

Thanks for being an active advocate for your sister - and we hope you find this site to be a source of information and support.  

 
 
 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation 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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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