The Atypical HUS Foundation

Brett Lettiere
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  • Western Springs, IL
  • United States
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Profile Information

Birthday
January 30
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:
Factor H (CFH) /Protein (Gene)

Brett Lettiere's Blog

aHUS conference at U of Iowa

Thanks for the aHUS conference at U of Iowa on Oct. 24-26. I haven't updated in a while and that is thanks to Soliris. It allows my wife and I to almost not have to think about aHUS. It was nice to take a weekend in Iowa and spend time hearing stories and listening. My wife and I came away with a lot. We understand the disease about as much as we can, but there are little details that we pick up.

1. I regret not getting a therapist for Phoebe when she was sick, and I think it is…

Continue

Posted on November 24, 2014 at 11:35pm — 1 Comment

Phoebe - Update

I have been meaning for a while to update this blog.  



At some point in February, we finally switched Phoebe to Soliris.  We were watching the factor H autoantibodies decrease.  We were given hope that her autoantibody level would go to zero.  They started at above 2,500 and they decreased to 2,000, and then1,200, and then 300.  At that point, we still decided to switch to Soliris for several reasons:

1. Plasma was scaring us, and it was taking 12 hours 2-3 times a…

Continue

Posted on April 24, 2013 at 4:05pm — 3 Comments

New to aHus / info / Concerns

Our daughter, Phoebe, 7 years old, was diagnosed with aHUS on Thanksgiving weekend 2012.  On Thanksgiving, our very healthy daughter woke up vomiting.  We assumed she had a stomach virus.  By Sunday, we knew she wasn't o.k.  She was pale and had slightly yellow eyes.  She was extremely lethargic and was still vomiting. 

Her original numbers from day 1 at the hospital were:

11/25/12

hgb = 5.5

platelets = 12

creatinine = 2.39

BUN = 154

LDH =…

Continue

Posted on January 10, 2013 at 11:30pm — 11 Comments

Comment Wall (1 comment)

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At 12:01am on January 8, 2013, Linda Burke said…

Welcome Brett,

I'm sorry to hear that your daughter has just been diagnosed at Thansgiving with aHUS, at 7 she’s a year yonger than my son Skyler. Loyola Hospital has a good reputation.  We have informational materials about atypical HUS online at http://atypicalhus.ning.com/page/ahus-brochure-3 with a 1 page flyer helpful for extended family, nursing staff, and friends. This summary of educational materials includes a detailed overview of this rare disease, our 'aHUS Bootcamp' which should prove helpful in understanding the medical terms (also online at http://atypicalhus.ning.com/page/a-parents-perspective-ahus).
For Phoebe’s physician Dr. Agrawal, our Home Page has a 'Doc to Doc Directory' where physicians can connect with other doctors experienced in treating aHUS patients - so printing out that directory for professional medical consults (free, aHUS docs worldwide volunteer their help to colleagues) might expand professional connections with aHUS expertise for Phoebe’s care team.  The ‘lab does does the Factor H test’ mentioned by Dr. Dixon is likely to be the University of Iowa’s MORL facility.  Our Foundation supports research efforts there, and Dr. Carla Nester and Dr. Pat Brophy volunteer in our Doc to Doc Directory (Dr. Brophy is also a member of this site, as well).. Regarding Phoebe’s 2X weekly plasma infsuions, the steriod, and CellCept, perhaps the care team has also mentioned  the IV drug Soliris aka eculizumab (the only FDA approved treatment for aHUS).  This site has Soliris information available at http://atypicalhus.ning.com/forum/topics/soliris-1 and you can call 1-888-SOLIRIS for further information.
Atypical HUS is a complex disease with a variety of manifestations, so perhaps you might also benefit from reviewing how aHUS can affect multiple organs in the body and not just the kidneys. (See http://atypicalhus.ning.com/forum/topics/ahus-complications-potential-impact-for-multiple-organs). I hope these resources provide valuable information to you, and that our website is a source of support for you and your family. Feel free to post and to ask questions as you wish/need.- our aHUS community seeks to inform 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.

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

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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