I miss this community, just been busy with day-to-day coping. Wishing everyone & their loved ones health and joy!
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Grace
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- Philadelphia PA
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Grace's Discussions
charity auction?
5 Replies
Started this discussion. Last reply by Phyllis Ann Talbot Oct 8, 2009.
Grace's Page
Latest Activity
Grace commented on Kerri Grey's blog post 'No Title'
congratulations! and thanks for sharing the precious pictures!
Grace commented on Phyllis Ann Talbot's blog post 'Home (for now) and happy Kidneversary!'
Happy anniversary! and happy happy "normal" life! I hope Hyde recovers rapidly and has a good biopsy tomorrow with as few complications/hassle as possible!
Grace commented on Svetlana Finley's blog post 'Update on Anna Finley'
I'll keep Anna in my prayers. It's so frustrating when things are not right and there are no answers ....
Shortly before I had my first relapse, my plts were higher than ever (>400) -- I wonder if it is a compensatory mechanism…
Grace replied to Vicki Provan's discussion 'Combined liver/kidney transplant in adults'
I can't help with the experience side, but I'll look into this a bit more. I know it's a big decision and best to be as informed as possible, especially if it is unfamiliar territory for the surgeon. I hope your next appointment goes…
Grace commented on Svetlana Finley's blog post 'Update on Anna and CD46'
I so glad to hear Anna is doing well!
There is a new paper just out (I put a link in the research forum) that has a table on protein levels for different mutations. Factor B is normal or decreased in most mutations (including CFB itself). The…
Grace replied to Lannette Yorgason's discussion 'Not diagnosed'
Hi Lannette,
Welcome! I first got sick at the age of 19 (I'm 30 now), and it's always been HUS/TTP. The fact that your doctors know your illness wasn't caused by E coli or a deficiency in ADAMTS13 is a big step forward in my…
Grace replied to Joy Lewis O'Brien's discussion 'Current research & presentations: for patients and healthcare providers'
An excellent, very comprehensive review was just published in the Orphanet Journal of Rare Diseases. Among other things, it discusses likely causes based on age at onset and how that should influence testing, and how protein levels of CFH, CFI, C3,…
Grace commented on Bill Biermann's blog post 'Cheryl and Nathan's big day'
Hooray! I hope it's an exceptionally smooth, speedy and uneventful recovery for both Cheryl and Nathan!
Grace left a comment for Cheryl Biermann
I hope you had a great time at the Grand Canyon!
Grace commented on Kathy Yates's blog post 'Been a while...'
Thanks for the update. I hope Brandi shakes off that virus very soon and regains her strength. Wonderful news is welcome, and I hope and pray that Brandi's experience continues that way.
Grace commented on Dana M Simone's blog post 'Day 4 Transplant Update'
I'm so glad to hear that Jack continues to do well. I hope you are all managing to get some sleep and recuperation. I found when I had a functional transplant that I was actually less susceptible to colds and such because my overall health was…
Grace commented on Jaime Lauck's blog post 'A New Hope (sorry Star Wars but it was appropriate)'
Hi Jaime, Thanks for the full introduction. I'm glad your'e managing without dialysis, but I'm sorry it's been a rough year for you. Hopefully things will just get better. I'm 29, too, and have been struggling with the…
Grace commented on Sharon Walker's blog post 'A little about me.'
Welcome Sharon, and congratulations on your marriage. I wish you and your family much happiness.
I can't imagine how hard it must be to have lost Jaimee and watch Kasey suffer through the same disease. I was diagnosed with aHUS at the age…
Profile Information
- Birthday
- August 8
- 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
Grace's Blog
Reflecting, Looking Forward
Five years ago today, I received a kidney transplant. It was an emotionally intense time that brought joy and unimaginable vitality. I was freer than I had ever thought possible upon commencing dialysis almost five years previously. The open doors beckoned, doors that seemed to slam shut when my own bogey of aHUS returned two years later.
I have many fond memories of the young woman I was, but I don't miss her. I have weathered the storm and found refuge within myself. If…
Continue Posted on May 14, 2010 at 9:36pm — 4 Comments
Introduction
Greetings! I've been lurking on the periphery for a few years, but I'm glad I found this forum tonight. I was diagnosed with aHUS in 2000, at the age of 19, and ESRD shortly thereafter. I had a functional transplant from 2005-2007, but I'm currently on peritoneal dialysis. Right now I am able to work full time as a research techician in molecular biology.
Wishing everyone health and happiness...and looking forward to meeting you.
Wishing everyone health and happiness...and looking forward to meeting you.
Posted on August 11, 2009 at 9:49pm — 6 Comments
Comment Wall (14 comments)
- At 8:43am on June 3, 2011,
Joy Lewis O'Brien said… Thank you, Grace! It was a lovely day, everything I could have wanted (including no rain!) How are you doing?
- At 10:06am on February 10, 2011,
Joy Lewis O'Brien said…
- Thanks, Grace! The ASN was pretty cool--to see so many people so interested in aHUS when I'm used to nobody ever having heard of it. It seems so long ago now! School is coming along; it feels all-consuming so I'm very glad this is the last semester. I bought the wedding dress! Very exciting! Most of the planning is done--we kept it very simple with just parents and siblings for a wedding on Martha's Vineyard. How about you? How has your winter in Philadelphia been?
- At 11:49am on January 31, 2011,
Cheryl Biermann said… - Wow! You've been busy! I hope you begin to feel weel soon, and best wishes in all your new endeavors.
- At 10:23pm on January 30, 2011,
Linda Burke said… - Hope Philly is treating you well, so glad to hear that you're settled in. Good to hear from you...feel better soon!
- At 9:27pm on March 10, 2010,
Joy Lewis O'Brien said…
- Thanks, Grace!
- At 11:25pm on December 23, 2009,
Jessica Olivia Frysz said…
- Thank you Grace :)
- At 12:07am on December 6, 2009,
Deborah Deffenbaugh said… - Hi Grace--Thanks for the information. This is all so overwhelming at the beginning and I keep feeling as though I am missing something. Alyssa will have additional genetic testing done eventually and i am hopeful to know more then but at this point she is only showing a mutation in the I factor. Do you have any kidney function? Alyssa has been on PD and is doing well on it, but I have noticed some swelling in her face lately. What precipitated your relapses? Take care and I hope all is well with you.
- At 11:29pm on October 14, 2009,
Linda Burke said…
- Hi Grace!
Just stumbled across a new article by Dr Edward Conway in the Sept.24. 2009 issue of the journal Blood which dealt with "Super factor B". I found it interesting but complex, as it twists through the maze (at least for me) of the complement system. I put a comment in Dr. Smith's conference Forum and will give a shout to Joy re: her wonderful research Forum. Hope things are terrific in your world!
- At 1:33am on October 8, 2009,
Christy said… - Thanks Grace! I I think it will go well--just ready to find out what's going on with my little Toot!
- At 11:28pm on September 20, 2009,
Amy Swarbrick said… - Just wanted to say hello since we are the same age:) 28 right? My birthday is also in August. My son Brody has ahus, he is only 17 months old. My husband and I have not been tested yet so we will see....Do you have any children?
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.
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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...
• • • • • • • • • • • •
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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