It’s global Rare Disease Day today!
Awareness and advocacy efforts on behalf of over 6000 rare disease patient populations will be in the spotlight today across the globe, thanks to the collaborative leadership of EURORDIS (European Organisation for Rare Diseases) and NORD (our National Organization of Rare Disorders).
Added by Linda Burke on February 28, 2013 at 12:00am — No Comments
Hi everyone! we are trying to get some feedback on the level of interest and timing of a possible conference on Atypical HUS at the University of Iowa. If you can just click on this link and answer the 2 questions - TOTALLY painless I promise and quick - but will give us an easy way to track responses!
Also - this is also a test to see how well it works. We…Continue
Added by Phyllis Ann Talbot on February 27, 2013 at 3:27pm — No Comments
Quick update for those who were worried - knock on wood Hyde's fever has been down since mid-day Monday so he went back to school today - YIPPEEE!!!! (for my sake not necessarily his!) His cough still sounds bad but as long as he doesn't run a fever again we'll just wait it out. Thanks so much for all the thoughts and prayers and hopefully we can go back to boring!
Haven't had a Hyde funny lately so a few weeks ago Hyde came home with a 'red' on his behavior…
Added by Phyllis Ann Talbot on February 27, 2013 at 1:09pm — No Comments
Today for the first time since Nathan's tplant, I wasn't sick at blood drive time, so I went in and was so moved to see all the other donors. I posted something on facebook about how quickly they were processing everyone and I get an immediate message from my niece, who was always too young or too tiny until now to donate, when Nathan was always going through so much blood and we had our dedicated donors she always wanted to. Just saw her update, a picture of her arm, needle and all, with…Continue
Added by Cheryl Biermann on February 26, 2013 at 8:17pm — No Comments
aHUS Regional Patient Meeting: Atlanta
A re-cap of the recent regional meeting in Atlanta – Feb. 22, 2013Continue
Ughhh - well - we had been doing so well as to be boring (which I LOVE) but Hyde woke up last Thursday with a fever. We went to the dr and he was negative for strep and flu, no ear infection and his chest was clear. (he'd had a cough for the last week or so - normal winter cough). Well - by Thursday night his fever went up to over 104.5 but had broken by Friday morning. We talked to our transplant folks as well as our pediatrician and ended up going to the CHOA…
Join us in raising awareness for rare disease issues, especially as global Rare Disease Day is held on Thursday February 28th. Since EURORDIS launched the first Rare Disease Day in 2008, it’s been held on the last day of February each year. This year's theme is 'Rare Disorders without Borders'. We recognize the challenges of rare disease patients and their families, and appreciate all the efforts of medical personnel and researchers who…Continue
Added by Linda Burke on February 23, 2013 at 1:00am — No Comments
Just a little request for prayers for us. A few months ago Nathan passed a very large kidney stone, which later resulted in us discovering a myterious something that looks like it might have blood flow to it. We have been told it could be scar tissue, or glue from an old procedure to his ureters or a tumor. Feb. 21 st the urologist will go in with a camera to find out.
Secondly, he's seen a very large increase in his blood pressure. We've gone from twice a day 5mg of…Continue
We started the Zachary Wallace Fund in memory of your Son, Zach who passed from this horrible thing called, aHUS. His brother Ben, now 7 years old has it too. Still no know factor diagnosed yet! So frustration.
We know the financial stress this disorder can hand us. If you are in need financially we are here to help. We give $200.00 per family a year to help out with whatever your child may need.
visit us at…Continue
Still no known factor deficiency with Ben. Sending labs to Canada again in hopes for a clear answer.
Our daughter, Devon was diagnosed with aHUS just about a year ago and is doing amazing! I asked her Hematologist about testing our 8 year old son and she said it is best to have his pediatrician keep an eye on him at his well check visits. Our pediatrician thinks we should test him for aHUS. Has anyone had their other children tested?
I was diagnosed with aHUS about 16 years back and have been on dialysis ever since with an unsuccessful transplant about 15 years back.
I am currently on daily nocturnal home hemo. I use 10,000 units of heparin. Suddenly my platelets have plummeted to 31,000! There have been no symptoms of a low platelet count. I repeated the test and the value is right. My hemoglobin is 11.8 and WBCs are 2,700 (my WBCs have always been around that). I have been asked to run tonight heparin free which…Continue
Are you an adult aHUS patient?
We're inviting adult aHUS patients to submit an article about how a diagnosis of atypical HUS affects family, work, college, and other aspects of daily life. These articles would become part of a new "Adults with aHUS" tab and enlighten others about coping/issues for adult aHUS patients. (Please contact firstname.lastname@example.org with your ideas/topics/questions. Select articles from…Continue
Added by lisa ann peterson on February 5, 2013 at 9:26pm — No Comments
Here in Australia Soliris is not an available drug for aHUS, it late last year became approved by our governing body - TGA
but now we need to get the governemnt to fund the use of the drug (our health care system is different and our insurance companies dont pay for medications) Alexion have submitted an application to the Australian government to approve the funding of this drug to make it accessible to all in Australia with aHUS.
The link below…Continue
Hey - this is a cut and past of our carepage update - so some repeats from my previous post on Monday!
Hi everyone, so sorry it's been SO long since we updated! Good news is it's because there's not much to say.
We had 2 pretty major milestones this week and it's always weird to me that these 2 very different anniversary's are so close together. Monday, Jan. 28, marked 5 years since the day I took an 18 mth old Hyde (with 3 yr old Ruthie in tow)…