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Grace
- Female
- Philadelphia PA
- United States
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- Discussions (26)
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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
"I'm sorry the biopsy did not provide better news, but hopefully it will be a small blip in an otherwise good health! Good luck with home infusions, I'm sure it will be a relief."
"Good work on starting the uHUS association in Spain! It is possible to use part of an adult liver, because the liver has an amazing capability to grow back. (Unfortunately, transplanting half a kidney won't work so well!) Especially as this…"
"I miss this community, just been busy with day-to-day coping. Wishing everyone & their loved ones health and joy!"
"congratulations! and thanks for sharing the precious pictures! "
"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!"
"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…"
"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…"
"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…"
"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…"
"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,…"
"Hooray! I hope it's an exceptionally smooth, speedy and uneventful recovery for both Cheryl and Nathan!"
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 "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 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...
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