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…

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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…

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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 =…

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

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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.

 
 
 

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