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

Latest Activity

Joy Lewis O'Brien commented on Grace's blog post New Meningitis Vaccine
"Both Trumenba and Bexsero (GSK) work with the complement factor H binding protein. I've reached out to my specialist to see if he knows if this should be avoided for those with CFH deficiency and will post the answer here when I get it."
Jun 5, 2016
Len Woodward replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"Thanks Grace I was just about to post something on the aHUSUK website and so was able to update it with the ASN abstract  http://ahusuk.org/why-do-some-at-risk-of-ahus-not-on-set-some-answers-found-in-devon/"
Nov 21, 2014
Grace replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"Thank you, Len, for flushing out the relevant points. Cheryl, it does boggle the mind a bit! I do think it is possible that family members carrying other aHUS mutations such as in MCP could have the protective CFH haplotype studied in this paper.…"
Nov 20, 2014
Len Woodward replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"Cheryl my amended version did not save in time and the point I wanted to make a point about the 3 generation example  mentioned earlier.Look at IDs 4.21 5.21 and 6.18 in Table 1- the Family Tree  and then their AAs GGs combination in Table…"
Nov 19, 2014
Len Woodward replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"This is difficult to understand and hard to follow the statistics/DNA notation. But look at Table 3 in the paper  and look at columns 6 7 & 8 and the combinations of  As Gs Ts ( DNA notation)  of  affected and unaffected…"
Nov 19, 2014
Cheryl Biermann replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"My mind can barely comprehend the twists and turns of the findings. I want to ask, specifically how many carriers are there who have the protective mutation? Does this indicate these protective mutations may also be found in others with Factor B or…"
Nov 19, 2014
Len Woodward replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"The suspected haplotypes have been known for a while, but this bit of research gives some statistical credence to the likelihood of having some haplotypes appearing  to be protective, and not having others putting people at less risk of aHUS,…"
Nov 18, 2014
Grace replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"Len led my to this paper by Drs. Goodship and colleagues in England. They have been following a few families with hereditary(factor H) aHUS for over thirty years. In this current paper, they review known genetic information and predict the…"
Nov 17, 2014
Len Woodward replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"Having had the opportunity to visit Milan to speak to Dr  Ardissno on the invitation from the Italian aHUS patient organisation Progetto Alice last year it was interesting to see the updated results. So, over 18 months on two now three…"
Oct 30, 2014
Grace replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"At the 2014 Iowa conference, Bu, a graduate student in Dr. Smith's lab and recipient of a Foundation grant, presented data on plasminogen mutations in aHUS. This is part of emerging data implicating the interaction between the complement and…"
Oct 29, 2014
Grace replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"This is the 2013 New England Journal of Medicine article describing the results of the Phase II clinical trials of eculizumab in aHUS. Dr. Carla Nester mentioned this article at the 2014 Iowa conference, and suggested that we may look forward to…"
Oct 29, 2014
Grace replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"Here is the Ardissino paper describing a cohort of 10 aHUS patients who discontinued eculizumab treatment, with dipstick monitoring to detect blood in the urine as a symptom of relapse (and to resume treatment). Dr. Carla Nester presented Figure 1…"
Oct 29, 2014
Cheryl Biermann replied to Joy Lewis O'Brien's discussion RESEARCH Forum
"Can't wait to share with our HC professionals, if they haven't already seen it."
Oct 6, 2014
Len Woodward replied to Joy Lewis O'Brien's discussion Research & Presentations: for Patients and Healthcare Providers
"Very sobering!  I wish we could have had this for our NICE submission. The NICE committee asked about the extra renal manifestations and although aHUSUK had collated quite a long list of these from UK patients experiences and from anecdotes…"
Oct 1, 2014
Len Woodward replied to Joy Lewis O'Brien's discussion Research & Presentations: for Patients and Healthcare Providers
"Indeed it does and turning this into a "universal" tool for clinicians  could mean that tailoring of treatment becomes more manageable improving safety and affordability over all. The sooner the access to eculizumab the less damage,…"
Oct 1, 2014
Grace replied to Joy Lewis O'Brien's discussion Research & Presentations: for Patients and Healthcare Providers
"This a sobering but important review of extra-renal manifestations of aHUS, affecting specifically brain, heart, lungs, gastrointestinal (including pancreas and liver), muscle and skin. It summarizes the current published literature, mostly case…"
Sep 30, 2014

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

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

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. …



Continue

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…
Continue

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.
 
 
 

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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