The Foundation for Children with Atypical HUS

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

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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.

Current research & presentations: for patients and healthcare providers
50 Replies

Started this discussion. Last reply by Cheryl Biermann Nov 7, 2011.

 

Joy Lewis O'Brien's Page

Latest Activity

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Joy Lewis O'Brien left a comment for Phyllis Ann Talbot
Thanks, Phyllis! I will definitely look for the full articles in about a month or so. I appreciate the notice!
Nov 13, 2011
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Joy Lewis O'Brien and Phyllis Ann Talbot are now friends Nov 13, 2011
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Phyllis Ann Talbot left a comment for Joy Lewis O'Brien
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…
Nov 10, 2011
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Cheryl Biermann replied to Joy Lewis O'Brien's discussion 'Current research & presentations: for patients and healthcare providers'
Great info!
Nov 7, 2011
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Joy Lewis O'Brien replied to Elizabeth Farrell's discussion 'Auto-immune disease association with aHUS?'
Len, I'm very curious about this as well, and I'm keeping my eyes open for any research on correlation between aHUS and any other disorders. If I see anything, I'll let you know! Joy
Nov 7, 2011
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Joy Lewis O'Brien replied to Joy Lewis O'Brien's discussion 'Current research & presentations: for patients and healthcare providers'
This is the first published article about the connection between H1N1 and aHUS. It was believed to have triggered several new cases of aHUS. Also notable is the line that only about 50% of the carriers with a genotype predisposition for aHUS become…
Nov 7, 2011
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Joy Lewis O'Brien replied to Joy Lewis O'Brien's discussion 'Current research & presentations: for patients and healthcare providers'
This is the first published report on neurological symptoms (thrombotic microangiopathy, or TMA seizures) thought to be related to aHUS. The paper suggests that the connection is to a hybrid CFH/CFHL1 mutation rather than to aHUS in a more…
Nov 7, 2011
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Cheryl Biermann replied to Joy Lewis O'Brien's discussion 'Current research & presentations: for patients and healthcare providers'
Thank you soooo much, Joy,  I'm sending these on! 
Nov 4, 2011
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Joy Lewis O'Brien replied to Joy Lewis O'Brien's discussion 'Current research & presentations: for patients and healthcare providers'
This article by Dr. Licht is a new good overview that I would suggest to parents/healthcare providers new to the diagnosis, or people who are familiar with the diagnosis but have a hard time explaining what the mutation does, or why the medication…
Nov 4, 2011
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Linda Burke commented on Joy Lewis O'Brien's blog post 'Back in the saddle again'
Glad to see that cute profile pic again....what's your favorite part so far about being a nurse practitioner?
Nov 1, 2011
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Cheryl Biermann commented on Joy Lewis O'Brien's blog post 'Back in the saddle again'
Great news, Joy, I'd love to chat but Cardinals are having the wierdest game of the century!
Oct 28, 2011
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Phyllis Ann Talbot commented on Joy Lewis O'Brien's blog post 'Back in the saddle again'
Congrats on everything!!! And so glad to have you back!!
Oct 28, 2011
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Dana M Simone commented on Joy Lewis O'Brien's blog post 'Back in the saddle again'
Congratulations, Joy and welcome back!
Oct 27, 2011
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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 looking…See More
Blog post by Joy Lewis O'Brien Oct 27, 2011
4 Comments
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Joy Lewis O'Brien replied to Linda Burke's discussion 'Soliris'
Congratulations, Burke family! This is a big milestone (even though it's a little thing!) I bet he's thrilled!
Oct 1, 2011
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Joy Lewis O'Brien commented on Bill Biermann's blog post 'FDA Approval for Soliris (Eculizumab) REJOICE !'
This is excellent news!
Sep 25, 2011

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)

Joy Lewis O'Brien's Photos

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Joy Lewis O'Brien's Blog

Joy Lewis O'Brien

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…

Continue

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

Joy Lewis O'Brien

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

Joy Lewis O'Brien

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. …



Continue

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

Joy Lewis O'Brien

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… Continue

Posted on November 20, 2010 at 11:00pm — 3 Comments

Joy Lewis O'Brien

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 (18 comments)

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At 1:42pm on November 10, 2011, Phyllis Ann TalbotPhyllis 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 BurkeLinda 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, GraceGrace 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 BurkeLinda 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, GraceGrace 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 TalbotPhyllis 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 ShahKamal D Shah said…
Congratulations Joy! All the best!
At 1:53am on August 25, 2010, Linda BurkeLinda 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.
At 12:03pm on March 16, 2010, Kamal D ShahKamal D Shah said…
Hmmm... sounds quite a task to get a lab here to do that. I will try and check anyway. The problem is the number of patients who would need that kind of testing is too small for any lab to be interested unless they have someone with a special interest in this.

Thanks anyway Joy!
At 9:31am on March 16, 2010, Kamal D ShahKamal D Shah said…
Well, there are a few that do some genetic research but not for aHUS.

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WELCOME - Friends, Family Members, Patients, and Researchers - JOIN US!

The Foundation for Children with Atypical HUS 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 "About aHUS" tab 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 300 cases of aHUS in the U.S., and it is most common with young children. The condition is life threatening and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your tax-deductible purchase of one or more bracelets will directly fund research to help end the tragedy and heartbreak that aHUS families live with every day. Each bracelet has an appraised value of $825, but your purchase price is only $295.

  

  
Or you can donate a specific dollar amount-every dollar will help the Foundation for Children with atypical HUS atypicalHUS.50megs.com


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Foundation for Children with Atypical HUS may be mailed to:
Atypical aHUS Foundation
19 Olde Colony Lane
Cape Elizabeth, ME 04107
For pearl bracelet orders, please allow extra time for processing checks.



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