The Atypical HUS Foundation

Tricia
  • Female
  • Muskego, WI
  • United States
Share on Facebook Share
  • Blog Posts
  • Discussions (1)
  • Events
  • Photos
  • Photo Albums
  • Videos

Tricia's Discussions

To test or not to test?
2 Replies

Hi! I was diagnosed with AHUS in October. My genetic testing showed that I have a mutation in the CD46 gene, autosomal dominant. I have 4 children, each with a 50% chance of having aHUS. Does anyone…Continue

Started this discussion. Last reply by Debbie Griggs Apr 28, 2016.

 

Tricia's Page

Latest Activity

Debbie Griggs replied to Tricia's discussion To test or not to test?
"One other thought (funny how you always get that after you press the send button). If you did have your children tested, and 1 came back positive, how would that make you feel and would you treat that 1 differently. Maybe that 1 would get better…"
Apr 28, 2016
Debbie Griggs replied to Tricia's discussion To test or not to test?
"My brother was diagnosed late last year and I have a 50% chance of having the same mutation. I've been giving a lot of thought to the question of being tested myself. If it comes back negative, that would be great, but if I had the same…"
Apr 28, 2016
Tricia posted a discussion

To test or not to test?

Hi! I was diagnosed with AHUS in October. My genetic testing showed that I have a mutation in the CD46 gene, autosomal dominant. I have 4 children, each with a 50% chance of having aHUS. Does anyone have any opinions about getting a child in this situation tested before they show symptoms? At first I thought I didn't want it hanging over their heads, but maybe it would be better to know so if they do get sick they will be treated appropriately?
Apr 16, 2016
Linda Burke left a comment for Tricia
"Hi Tricia, Welcome to this site, we hope you find it to be a source of information and support.  As an adult aHUS patient who has dealt with the complexities of diagnosis, we hope that you share your story and insights."
Dec 15, 2015
Tricia is now a member of The Atypical HUS Foundation
Dec 15, 2015

Profile Information

Birthday
April 7
I am a caregiver for an aHUS patient
No
I am an adult aHUS patient.
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:
MCP (MCP/CD 46)

Comment Wall (1 comment)

You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

At 2:09pm on December 15, 2015, Linda Burke said…

Hi Tricia,

Welcome to this site, we hope you find it to be a source of information and support.  As an adult aHUS patient who has dealt with the complexities of diagnosis, we hope that you share your story and insights.

 
 
 

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.

************************

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service