Hello. I received your message. My children are diagnosed with aHUS. At the moment one of them has a relapse. He is using Solaris now. He is the first child to use it in HK. He seems to have some side effects like vomiting, diarrhea and stomachache. Is that normal? I am glad I found this so that I can know more.
Welcome to our group! I'm an adult 35 yrs old who has been dealing with Ahus since I was 28. I was on dialysis for 3 years. Hemo and peritoneal. I've had a kidney transplant and now an on soliris. I'm an open book so you can ask me anything. Please feel free to chat, call me or email me. I'm also on fb so many ways To communicate
Sending you well wishes
Hi everyone. I sent a msg to Linda saying thank you, and for your warm welcome thank you everyone. I am still wondering how to cope with the diagnosis -- mutation of the C3 gene, acute episode in December for which I was hospitalized under difficult circumstances here in China -- and feel I have not adjusted -- that may take some time. I have 2 kids and work full time and in fact tried to do a work event today after being off work since Dec. 10 and found it very, very tiring. Is this normal? I'm wondering how I can possibly get back to "normal" life. Did any of you have this experience? (I'm guessing the answer may be yes?)
Also -- the oddest thing -- I've been on eculizumab for 2 months and that should now be over for now (but who knows.) But recently I've noticed that my joints ache all over. It's almost like fibromyalgia, from what I've read. Does anyone know about this?
Oh dear. It's a lot to cope with, isn't it? I hope everyone is well.
If you ever have any questions or need to talk, leave me a message. I am 31 years old and having been living with aHUS for about 3 years now. At times it can be quite overwhelming raising my 3 year old daughter while working full time, but I am lucky to be able to live a pretty normal life.
Hope all is well, and once again, welcome to the community :)
Welcome! I'm also an adult patient. I was diagnosed 14 years ago and am currently on peritoneal dialysis and working full time. There are many great resources here, especially the friendly people! Please let me know if I can be of any help.
Welcome, we hope this site provides you with information and support. As a recently diagnosed adult with aHUS, you may wish to check out the tab 'Adults with aHUS' to connect with other adults. The physician and aHUS researchers who presented at the University of Iowa's 2014 aHUS Family Conference are now online (see the tab 'aHUS Materials & Info')
We look forward to your participation here, and welcome you to add a Home Page blog to share your story.