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Linda Burke's Discussions
A Precautionary Note about Plasma and TRALI
4 Replies
Started this discussion. Last reply by Linda Burke Jun. 30, 2009.
Genetic Testing
10 Replies
Started this discussion. Last reply by Cheryl Christine Pallme Biermann Feb 23.
Soliris
161 Replies
Started this discussion. Last reply by Kerri Grey 8 hours ago.
Linda Burke's Page
Latest Activity
Yey Skyler, It's really good to hear that he is doing so well, and its encouraging to know that some of these kids most of these kids are doing really well on Solaris.
Eleven (yes, 11) months using Soliris---
Skyler continues to do well using 300mg of Soliris infused through his mediport once every 2 weeks. All labs are well within normal parameters for his age (5.75 years old) - yippeee! Skyler is very tall for h…
Few people can understand the angst involved with your current situation - I'm sorry that you've had to deal with this turn of events. It's said that when one door closes, another one opens....so keep the faith that a better opportunity will arise.…
Sounds like a wonderful school environment for Nathan, and his district-wide Service Award recognizes Nathan's ability to transcend his personal trials in favor of enriching the lives of others. Way to go, Nathan... you make us all proud!
Hi Maria,
To maximize your chance of responses from Soliris patients/patients, please try putting Soliris-related posts in the existing Soliris Forum.... Feel free to re-enter this question there.
Skyler (who has a factor H mutation) was taking bloo…
Wow Kerri,
I'm so sorry this isn't working for you as it has for everyone else. We will pray that it is only a matter of time.
Hi Jodi, Yes the docs are saying that they are just hoping that now the c5 shows that it is inactive that the kidneys are just taking their time to follow, they have said there will be long term kidney damage they are just not sure how much, ash's l…
Hoping that Anna's numbers hold and that her staph infection clears soon!
Whoo Hoooo- sending every best wish for a looong stretch of fun and carefree frolic for y'all!
Profile Information
- Birthday
- August 24
- Do you have a friend or family member diagnosed with aHUS?
- Yes
- Are you medical personnel or a researcher with an interest in aHUS issues?
- No
- My child ( or myself as a patient) is best described as:
- Factor H (CFH) Protein(Gene)
Linda Burke's Photos
Linda Burke's Blog
Help Keep This Support Network Strong
In the past 10 days, the trust of this online support network for aHUS patients and families has been breached by employees of an online Canadian pharmacy, who have posted commercial ads on this site without permission. This website exists 'commercial free' due to the generous financial and technical support of Steve Greene and the Alpha Marketing Team, and is backed by the wonderful expertise and organizational skills of Bill and Cheryl Biermann (The Foundation for Children with Atypical HUS).… Continue
Posted on January 24, 2010 at 10:30am — 10 Comments
The Broken Window
Seems that I'm busy mending things at this time of year - mittens and holes in pockets, to name a few items. When my fingers are flying with needle and thread, my thoughts are flying too...swirling around a variety of topics, it's then that my thoughts leap from one train of thought to another. Mending pockets to mending fences to ... things un-mendable.
During the holidays, people struggling with life challenges all too often heard a hollow ring in others' joy-filled messages of cheer. These ar… Continue
During the holidays, people struggling with life challenges all too often heard a hollow ring in others' joy-filled messages of cheer. These ar… Continue
Posted on January 9, 2010 at 10:57pm — 2 Comments
'Doc to Doc' Registry - Sharing aHUS Expertise
You'll note the addition of a new feature to our Home Page - the 'Doc to Doc' Registry, conceived of the necessity to integrate physicans' aHUS experiences with colleagial consultations that offer clarity and insight. Atypical HUS is such a quirky disorder, with a myriad of complexities that can baffle even the most determined doctors and researchers. Learning from each other's aHUS case histories, physicians draw from others' expertise and experiences via a telephone consult. While they… Continue
Posted on December 14, 2009 at 11:24pm —
Shop and Search through iGive.com
Tis the season for thoughfulness as well as holiday shopping, so why not combine the two and log on to iGive.com when searching or shopping online. Every time you shop online, over 750 online retailers (like Sears, eBay, QVC, Expedia.com, BestBuy, FTD.com, Magazines.com, ToysRUs and Amazon) donate a percentage of the sale to your chosen cause, The Foundation for Children with Atypical HUS. Yes, you can still use coupons and search for the best deals - iGive.com costs nothing, yet it will… Continue
Posted on December 2, 2009 at 1:00am —
FACEBOOK FANS: iGive.com and You CAN Make a Difference Today !
Actually, everyone reading this can make a dramatic difference in the lives of aHUS patients and their families! How often do you use an internet search engine such as Google or Bing to explore an interest area or to find information on the Web? Do you ever shop online? Join our aHUS patients and families at iGive.com and iSearch.iGive.com and - at absolutely no cost to you- The Foundation for Children with Atypical HUS will receive a cash donation. Here's how it works.....… Continue
Posted on November 10, 2009 at 12:30am — 3 Comments
Comment Wall (59 comments)
- At 1:25pm on March 5, 2010,
Ethan Ardoin said… - Thanks for touching base. Ethan was doing well before he caught the flu(regular strain) this week. He is slowly recovering. He just gets tired of being sick and tired, if you know what I mean.. Thanks for asking. I hope all is well with your family.
- At 12:38am on March 5, 2010,
Svetlana Finley said… - Thanks Linda!!! Anna is very exited to be line free ;-) I hope it will lost looooonnngg time ;-)
Have great day!!!
Sveta
- At 7:02am on February 22, 2010,
Lisa L. Brown said… - Linda,
What a wonderful way to honor Hunter and to help those affected by the earthquake. It appears that this site is getting much attention and I can see it is helpful to so many. Sending hugs to you, Brad, and Skyler.
Lisa
- At 8:24am on February 16, 2010,
Joy Lewis said… - Thanks, Linda! I learn so much from this group about what makes a difference for the best care for patients and their families!
- At 7:35am on February 12, 2010,
Theresa Pereira said…
- Hi Linda
Yes I had already registered but could not for the life of me remember the email address I gave to log in. I tried everything and it did not work. So I just started from scratch.
Have a great day
Theresa
- At 12:37am on February 9, 2010,
Kortnee Fornetti said… - Thank you Linda! I will do that :)
- At 11:30pm on February 8, 2010,
Kortnee Fornetti said…
- Thank you! It's so great to know other family's stories and have information so easily accessible! :)
- At 8:11am on February 5, 2010,
Lisa L. Brown said…
- Linda,
I hope things are going well. I got the information about the money raised and noticed the pictures of Skyler, what a cutie, like his brother. How is Skyler doing overall. I hope all is well.
Lisa
- At 9:13am on January 27, 2010,
Shirley L Cosgriff said…
- Linda, Thank you for getting to me. I have sent an invitation to my niece to join the Foundation and she had accepted this morning. I did see she hasn't added much but I think everything is still a big shock for her. I commented on her site and have given Heather Still her name and email also. I am sure she will be getting in touch with you also. Her name is Candace Mulcahy and her daughter is Chloe. She was admitted in Upstate one week ago today and we are still waiting to see how things are going. As the days go on, I am sure I will have more questions, but it is good to know we have people out there to talk to. Thank you , Shirley
- At 10:36am on November 29, 2009,
Melanie Mergentime said… - Hi Linda,
I plan on putting up Sammi's story as soon as I can. Samantha passed away 5 months ago from ahus. We are now trying to make sense of it all (it probablly never will make sense). But we are trying to learn as much as we can about te disease. I hope this site will help.
About
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 2010 genetic testing and treatment.
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 2010 genetic testing and treatment.
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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