The Atypical HUS Foundation

Michele Haymes
  • Female
  • Victoria
  • Australia
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Michele Haymes's Friends

  • Santosh Suryawanshi
  • Brett Lettiere
  • Judy Warner
  • Kerri Grey
  • Svetlana Finley

Michele Haymes's Discussions

Anti Factor H Antibodies
13 Replies

Hi Everyone,  I'm a new member in the group - my 5 year old son Jeremy was diagnosed with aHUS in September last year.  In January we were told that his condition had been narrowed down to Anti FH…Continue

Started this discussion. Last reply by Svetlana Finley May 9, 2012.

 

Michele Haymes's Page

Profile Information

Birthday
October 24
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.
Nil
My child ( or myself as a patient) is best described as:
Anti-FH-Ab (CFHR1/CFHR3)

Michele Haymes's Blog

Update on Jeremy (FH Auto antibodies)

Hi everyone, wanted to give an update on my brave little man. Since being testing in Jan 2012 revealed he had Factor H Autoantibodies, has has been on immunosuppressants (Azathioprine and prednisolone) with great results. He had his last plasma exchange in Feb and we finally had his Central Line removed on May 3rd, just two days before his 6th birthday. Needless to say he was a very happy boy at his magician themed birthday party where his whole class plus some kindergarten friends attended. In… Continue

Posted on June 8, 2012 at 7:43pm — 1 Comment

Comment Wall (5 comments)

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At 8:17pm on May 19, 2013, Brett Lettiere said…

Michele,

Thanks for making contact.  I hope you update about Jeremy for me.  Since my last update, we have gotten the genetic test back from Iowa.  Phoebe has a deletion of CFHR 1 & CFHR 3.  Her autoantibodies has increased to 1500.  My wife and I took Phoebe off the immune suppressants for now.  We are going to meet with some other doctors and try to figure out if it is worth continuing on the immune suppressant or not.

 

I am sad to hear that Soliris is not available for you guys if you were to need exchanges again.  The medicine is really amazing.  My wife and I are nervous about long term, but currently it has been really good.   I also feel guilty about how expensive it is and what that is going to do to all of my colleague's insurance premiums. 

 

Please stay in touch.  The worst thing about this illness, I think, is that I have a limited amount of people who know anything about it.  

We have some important doctor appointments over the next week.  After those, I will update.  There is still a lot that I don't understand.

 

We are going to have our son tested next month to see if he has the same deletion. 

At 12:39am on January 3, 2013, Svetlana Finley said…

Hi Michele, just checking see how ur little boy doing? Is he still on treatments anymore episodes since last February?

At 1:38pm on December 6, 2012, Svetlana Finley said…

Hi Michele, I been thinking about you and your kido lately. How is everything? Anna is on Soliris and doing great.

At 11:52pm on February 4, 2012, Kerri Grey said…

Hi Michele, Linda just told me about you joining this foundation and that you are also from Melbourne!!! I too am from Melbourne and my son Ashley has attended the children's hospital for the past 3 years with aHUS.  How long ago was your child diagnosed?? Which nephrologist do you see?? What sort of treatments is your child having??

Cheers Kerri

At 9:57pm on February 4, 2012, Linda Burke said…

Hi Michele -

Welcome to our aHUS community, we hope you find information and support here.  Fellow Aussie Kerry Grey is busy settling her gorgeous new baby Ollie into their family life in Victoria, but her aHUS experiences with son Ash might provide some valuable insights.  Feel free to post a blog on our home page to introduce yourself, your interests in aHUS, and questions you might have for others.

 
 
 

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

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