The Atypical HUS Foundation

Brett Lettiere
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  • Western Springs, IL
  • United States
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Brett Lettiere's Friends

  • Santosh Suryawanshi
  • Samantha Blaszynski
  • Erin Converse
  • Kimberly Tressler
  • Michele Haymes
  • Jonathan Aguallo
  • Donna Kolp
  • Svetlana Finley
 

Brett Lettiere's Page

Latest Activity

Brett Lettiere and Santosh Suryawanshi are now friends
May 4, 2017
Cheryl Biermann commented on Brett Lettiere's blog post aHUS conference at U of Iowa
"I'm glad you got a lot out of the meetings, it is always something that we look forward to as well. I think the psychologist and patient panel was very well received and offered valuable insights. In the thick of medical emergencies and…"
Nov 26, 2014
Erin Converse and Brett Lettiere are now friends
Nov 25, 2014
Brett Lettiere posted a blog post

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 possibly…See More
Nov 24, 2014
Brett Lettiere and Samantha Blaszynski are now friends
Sep 25, 2014
Brett Lettiere is attending Linda Burke's event

Oct. 24-26th, 2014 - aHUS Conference at the U of Iowa at University of Iowa, Carver Medical School

October 24, 2014 at 4:30pm to October 26, 2014 at 10:30am
The University of Iowa and the Foundation for Children with Atypical HUS announce the 2014 aHUS Family Conference to be held at the University of Iowa on October 24-26, 2014.JOIN US for the only aHUS conference in the United States to offer multiple medical presentations from 6 aHUS experts and covering high-interest  topics such as mutations, disease pathology, the complement cascade, transplant issues and MORE! Click here to …See More
Jul 24, 2014
Michele Haymes commented on Brett Lettiere's blog post Phoebe - Update
"Hi Brett, My name is Michele and my son Jeremy, now 7 was diagnosed with aHUS in August 2011. In December, 2011 we where told that his particular aHUS was Factor H autoantibodies. Jeremy is now in remission and has been so since Feb 2012, which is…"
May 19, 2013
Cheryl Biermann commented on Brett Lettiere's blog post Phoebe - Update
"Great news:) If I were trying to make a decision, I would surely seek Iowas input, just a thought.  Good luck, may God grant you peace."
Apr 25, 2013
Brett Lettiere posted a blog post

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 week.2. I started to think that…See More
Apr 24, 2013
Brett Lettiere and Jonathan Aguallo are now friends
Apr 24, 2013
Linda Burke commented on Brett Lettiere's blog post New to aHus / info / Concerns
"If you have not yet explored comments in the Soliris forum, I'd encourage you to visit http://atypicalhus.ning.com/forum/topics/soliris-1. ; Have you called 1-888-SOLIRIS to gather information and ask questions?"
Feb 15, 2013
Cheryl Biermann commented on Brett Lettiere's blog post New to aHus / info / Concerns
"ran out of room on the android.  Anyway, don't let the change happen because of costs.  If the science is good, then you are fine, if it isn't and the change is made, make sure they are willing to go back to Soliris as a back up.…"
Feb 14, 2013
Cheryl Biermann commented on Brett Lettiere's blog post New to aHus / info / Concerns
"I have the same question as Donna, ask your doctor his reasoning.  We will fight tooth and nail if they ever try to take Nathan off.  Like Jonnathan, he was long-ter, five years spent battling the disease, then 5years watching his slow…"
Feb 14, 2013
Donna Kolp commented on Brett Lettiere's blog post New to aHus / info / Concerns
"Hi Judy! Wow, you have had your share, and your son as well!!! So thankful that Jordan is able to receive Soliris! My question is does the Dr. think Jordan immune system is not what it should be, hence wanting to give him the Gamma Globulin? And why…"
Feb 13, 2013
Judy Warner commented on Brett Lettiere's blog post New to aHus / info / Concerns
"  My son Jordan is 11 yrs old. He LOVES FOOTBALL and plays footbal for a rec league!                               Yay, Baltimore Raven's!!!! Superbowl Champions!! :) He wants to play for the NFL one day.    On June 25, 2012 he called for me to…"
Feb 13, 2013
Brett Lettiere is now friends with Kimberly Tressler and Donna Kolp
Jan 13, 2013

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.

 
 
 

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