-
Kerri Grey
- Female
- Victoria
- Australia
- Share
- Share on Twitter
- Share on Facebook
- Blog Posts (3)
- Discussions (20)
- Events (1)
- Photos (28)
- Photo Albums (2)
- Videos
Kerri Grey'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.
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…
Thanks Linda i really appreciate all your support i find it so hard to speak to friends and family about all this cause they just dont understand about the technical side of it all when people ask how Ash is doing my typical response is "he is up an…
Hi all, i have not updated every time Ash has bloods in the past week cause we are there 3 times a week. So i thought i would give you a general run down of the last week. As i reported last mon Ashley's bloods were not very good so he had plasma ex…
Thanks Cheryl, I'm hoping its just gonna take some time. Ash had bloods done yesterday before plasma exchange and then solaris. His bloods were slightly improved from Mon but now its hard to know if its from solaris or the plasma exchange so i guess…
Thanks cheryl, i got my brother in law to have a look at it and he found the email address the right way and we assumed it would be the right one cause it was so close and in the same area so i sent an email to that one hoping it was the right one b…
bbiermann@premier-ks.com sometimes I forget the 2 bs or the dash or some other small thing.
oops sorry, I recheck it and get right back to you!
Hi Kerri,
This interactive website is the linking hub for patients, families, friends and researchers interested in aHUS issues and was only launched this past summer - thanks to all of you Members who truly form the heart of this site! As the socia…
Hi Cheryl thankyou so much for all your information. I have tried to email Bill wih this email address and and it keeps coming back to me saying there is errors with it
Kerri, please get in touch with Bill Biermann, President he is on the site and his email is bbiermann@premier-pks.com. He'll reply if he receives an e mail and I'll let him know to check the site when he gets home.
Kerri, I think I mixed up Ashley with another child on my last of several emails to you, sooo sorry! Anyway, friend requests come directly to my email and then when I go to the site I just hit approve or accept. I think I go to my page,
Hi all, I am looking at doing a family fun day fundraiser in October and i want the funds to go to the foundation for children with ahus and to the nephrology department at the childrens hospital here in melbourne. To register with consumer affairs…
Profile Information
- Birthday
- March 13
- 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:
- Tested but Awaiting Results
Kerri Grey's Photos
Kerri Grey's Blog
Fundraising Registration
Hi all, I am looking at doing a family fun day fundraiser in October and i want the funds to go to the foundation for children with ahus and to the nephrology department at the childrens hospital here in melbourne. To register with consumer affairs i need to get a letter from the foundation for children with ahus to say that they agree to hope 4 kids with ahus ( What we are calling our fundraiser) to raise funds for them. Does anyone know who i need to contact for this so i can start getting the… Continue
Posted on February 22, 2010 at 6:08pm — 7 Comments
Awareness/fundraising
Hi, I have been thinking about whether i should try and do some awareness/fundraising into ahus in Australia as there is nothing. No one has ever heard of it and even the people diagnosed with it have a hard time trying to understand it. I have never done anything like his and do not have any idea what sort of thing i should do or where to start, does anyone have any ideas that could help me.
Posted on February 18, 2010 at 4:00pm — 11 Comments
New to this site - 20 month old with ahus
Hi all, I am new to this site and have been looking around on the net for supports and info on this horrible disease.
I have a 20 month old son - ashley - who was diagnosed 13 months ago with ahus and lets just say that the last 12 months have been a massive roller coaster ride. Ashley was on PD for 8 months then came off and was doing plasma infusions which did work so went to plasma exchange which is not really working either so now his doc is trying to apply for the trial o… Continue
I have a 20 month old son - ashley - who was diagnosed 13 months ago with ahus and lets just say that the last 12 months have been a massive roller coaster ride. Ashley was on PD for 8 months then came off and was doing plasma infusions which did work so went to plasma exchange which is not really working either so now his doc is trying to apply for the trial o… Continue
Posted on February 6, 2010 at 9:11am — 11 Comments
Comment Wall (5 comments)
- At 10:45pm on February 24, 2010,
Linda Burke said…
- Sending along a hug as you ride a rollercoaster of emotions....sending prayers that Ash's treatment plan with Soliris will soon yield improved lab numbers. Hang in there!
- At 8:25pm on February 24, 2010,
Grace said…
- It is so great to see the joy in the faces of all your beautiful children! I hope Ashley's aHUS remits soon!
- At 11:16am on February 15, 2010,
Svetlana Finley said… - You have awesome family!!! Love your kids pictures ;-)
- At 8:06am on February 12, 2010,
Phyllis Ann Talbot said… - Hi there Kerri - i'm a little late but wanted to welcome you and tell you good luck with the Soliris! By the way - the new pics are adorable!!! what a cutie!
- At 10:31pm on February 9, 2010,
Jodi Kayler said… - Hi Kerri, In response to your question on the blog. Our doc thinks he can go a few years at least--maybe into his teens. His creatinine hangs at 1.5 but all his electrolytes have continued to stabilize. Coen only had plasma exchanges the first year of his diagnosis. Daily exchanges would only keep his platelets stable but not allow his kidneys to function. We finally figured out that constand weekly doses IVIG did help, and that is what he was on for 4 years. Last year, his relapse was so severe that they tried plasma exchanges and IVIG, with no luck. You are very lucky that you don't have to worry about insurance coverage! So far we haven't had any hassles with it but I'm always worried we may in the future. Keep us posted on the Soliris. I typically post Coen's updates in the Soliris forum.
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.
Badge
© 2010 Created by Christy White on Ning. Create a Ning Network!
