The Atypical HUS Foundation

Joy Lewis O'Brien
  • Female
  • Arlington, MA
  • United States
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Joy Lewis O'Brien's Discussions

Transplant Considerations: Things to think about when choosing a transplant center
23 Replies

Started this discussion. Last reply by KaTrina Slaughter Sep 22, 2010.

How Soliris Works
3 Replies

Started this discussion. Last reply by Cheryl Biermann Apr 8, 2010.

RESEARCH Forum
88 Replies

Started this discussion. Last reply by Len Woodward Nov 21, 2014.

 

Joy Lewis O'Brien's Page

Profile Information

Birthday
May 27
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?
Yes
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)

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Joy Lewis O'Brien's Blog

Back in the saddle again

Hi all! After a whirlwind summer comprising graduation, getting married, honeymooning, taking my certification exam and then going through the several-months-long process of getting accredited with all my licenses and registrations, I am finally employed as a nurse practitioner and have access to a medical database again! I've pulled some interesting articles and I'm working to get full copies that I can load into the research forum. I'm so happy about the FDA approval for Soliris and…

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Posted on October 27, 2011 at 4:22pm — 4 Comments

Sessions about transplants at ASN

Saturday afternoon I went to a session on transplants that covered a couple of topics of interest to this community, specifically the advantages of national kidney registry chains (instead of paired swaps) and special interests in pediatric transplants.



On the first topic, National Kidney Registries is a non-profit organization started by a father (Garet Hill) searching for a kidney donor for his daughter. He and his relatives were not compatible, and the wait time for a donated… Continue

Posted on November 23, 2010 at 9:30pm

Meeting with Dr. Loirat while at ASN

Dear all,



I had the opportunity Saturday morning to talk with Dr. Chantal Loirat, a pediatric nephrologist and researcher based in France. She told me about a recent study using Soliris (eculizumab) in adult and adolescentpatients with aHUS who are resistant to plasma therapy. …



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Posted on November 23, 2010 at 10:00am — 4 Comments

American Society of Nephrology's annual meeting in Denver

Hello all,

I am excited to let you know that I am at the American Society of Nephrology's annual meeting in Denver, representing the Foundation and striving to be your eyes and ears regarding relevant news

and updates regarding the lives of aHUS patients. Yesterday morning I attended a poster session in which research from one study was presented about the clinical trials with Soliris (eculizumab). The crowd in front of the poster was 2-3 people deep and I had a hard…
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Posted on November 20, 2010 at 11:00pm — 3 Comments

Introduction

I found out in 2007 that I had the Factor H mutation through the University of Iowa, but at 33 I have been asymptomatic all my life. Upon receiving the news, I rushed to get my brother tested (negative) and then my parents. When I found out that my mother had the same mutation, I urged my parents to pull my sister's medical records. She was born in 1979 and died the same year at 8 months old after a severe illness with protracted hospital stay. My parents had always understood and had… Continue

Posted on June 22, 2009 at 7:31pm — 5 Comments

Comment Wall (20 comments)

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At 7:28pm on November 23, 2013, Cheryl Biermann said…

Oh that would be wonderful!  Thank you.

At 11:53am on November 17, 2013, Cheryl Biermann said…

Hi Joy!  i hope married life is treating you well!  I was wondering if you knew of any research on aHUS in patients of advanced age?  We have a new member whose mother is in her 70s and slow responding to Soliris, although that isn't unheard of, I am just hoping to find something.  Thanks.  cheryl

At 1:42pm on November 10, 2011, Phyllis Ann Talbot said…

Joy - sent you a friend request so I could send you an e-mail - somehow skipped that over the last few years!   Congrats again on your very exciting year!  I had a question - I had set up a Google alert to send me stuff if anything comes out related to AHUS - anyway - I guess the abstracts were published for what is going to be presented at the ASH conference (am society of Hematologists) and there are several abstracts related to AHUS and Soliris - I doubt there's anything out there now except for the abstracts - but maybe we can keep an eye out for when the full things are published?  The conferecne isn't for a month - and one of them is actually by our own dr - so I might be able to ask him for it to post - will let you know - thanks!

 

 

http://www.marketwatch.com/story/researchers-to-present-additional-data-on-solirisr-eculizumab-as-a-treatment-for-patients-with-pnh-and-ahus-at-ash-annual-meeting-2011-11-07

At 11:56pm on June 5, 2011, Linda Burke said…

Yipppeeeeee!  Best wishes for a long and happy life together, exploring exciting options and pondering the presents that each new day brings.  May you find that each sunset brings a day well-spent - filled with faith, laughter, and contentment!

At 9:24pm on June 2, 2011, Grace said…
Congratulations!!! You look like a very beautiful and happy bride. May you have many happy years together.
At 10:14pm on May 17, 2011, Linda Burke said…
WhoooHooooooo- great profile photo!  And look at those fancy sashes!!!  Congratulations on such a huge achievement........
At 10:04pm on February 7, 2011, Grace said…
What a great time you must have had at the ASN. Thanks for sharing. How are your studies? And wedding plans? I know you must be busy but I hope in a good way!
At 2:12pm on August 25, 2010, Phyllis Ann Talbot said…
CONGRATS Joy! That's awesome! Good luck with all the planning and HAVE FUN!
At 10:19am on August 25, 2010, Kamal D Shah said…
Congratulations Joy! All the best!
At 1:53am on August 25, 2010, Linda Burke said…
You're engaged!!!!!! CONGRATULATIONS- so very happy for you! (**cartwheels at this end**) God bless you both, and happy wedding planning- please keep us posted on all the wonderfully joyous details.
 
 
 

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