Hello

[Alyssa Deffenbaugh]

Hi everyone.
My name is Alyssa, and I was diagnosed with aHUS in January of this year. It has been a terrible year, I spent the first three months of it in and out of the hospital, and very very sick. Things are looking better right now (Knock on wood), I usually feel pretty good, other than always being so tired. I am waiting for a kidney transplant, but in the meantime I am going to Iowa for some further genetic testing. I have already done some genetic testing, and they came back with a mutated I gene, but not one that they have ever seen to cause aHUS. They said they are 90% sure that it is a gene that could cause aHUS though. I'm not really sure what to think about the whole thing, I am just very sick of feeling sick. I am on PD, doing the cycler 9hours a night, and also during the day. Not much fun, not the life a 22 year wants to live. I am the friend of Jill Ziegler, who always got sick in January, right about the same time as me. I am so lucky to have found her, she really helped me through it a lot. If anyoe has any information to share with me, it would be so muchly appreciated. I have been so down in the dumps lately, so any good news would be so awesome :)
Hope to hear from anyone soon :)
Alyssa

[Patricia Barresi]

Hi Alyssa! I just wanted to let you know that I am thinking of you and praying that 2010 will be a great year for you. This is an excellent site; it's so nice to be able to keep in contact with people that are going through the same thing you are. It's also an excellent way to keep on top of what is happening and to be knowledgeable about what to ask your doctors. I hope you, your mom and dad have a good trip to Iowa and that you get some new information that will help you out.
I love the picture of you and your brothers!!
Thinking of you...Trish Barresi

[lisa ann peterson]

may 2010 bring you better days...i was just thinking about you and how you said you have been a little down so i just wanted to leave you a message to keep your chin up......

[Jill Ziegler]

Hey my friend!!!!
I love you!! I am going to call you today.
Happy New Year sweet pea!

[Grace]

Hi Alyssa and welcome! I'm sure you're glad 2009 is almost through and can't bring you more misery. I hope 2010 is a wonderful year for you.I was diagnosed with aHUS nine years ago at the age of 19, and I'm sick of feeling sick too. I'm glad you joined this community, and happy you and Jill have been so supportive of each other. If you have any questions or anything I'd be happy to do what I can to help.

[lisa ann peterson]

hi alyssa my lil miss chloe was diagnosed in march 2008 she is five now.. i wont sugar coat this for ya.. AHUS is hard and its a fight.. but read everything you can educate yourself and live it one day at a time.. there is so much new research and treatment options coming out now ask questions.. i hope that you stay positive that is the only way to do this..please use this website to educate,vent,keep us posted on your care and to find hope and faith through all of the people on here who battle AHUS that is what it was intended for.. god bless and keep your chin up..

[Colette Ann Frysz]

Alyssa,
My daughter Jessica has had atypical HUS since she was 11 months old and is now 21 nearing 22. She has been on hemodialysis most of those 21 years. If there is anyone that can relate to what you endure she could. Look her up. She is glad to talk to anyone.

[Svetlana Finley]

Hi, Alissa!!
Welcome here, I am glad u jointed this site and i hope u will find very helpful and supportive.

[Jodi Kayler]

Hi Alyssa, Welcome! I'm so sorry about your recent diagnosis. Cheryl is right that this year is the first time there are new treatment options. My son, Coen, is 6 years old and was diagnosed when he was 11mos. In April of this year, he was started on Soliris, and for the 1st time in 5 years, his HUS is in full remission and feels better than he ever has. Over 5 years, his kidneys have taken a brutal assault but now even his kidney function has improved enough that we may be a few years away from having to consider a transplant. He also used to have low energy and feel cruddy--even on his good days. Now, he keeps up with every other 1st grader. Just in the past year, research has made huge leaps--which has given all of us that deal with aHUS new hope. Please feel free to ask anything. I'm glad you found the site.

[Cheryl Biermann]

Hi Alyssa, and welcome, you now have a lot of information right at your fingertips that isn't in researcher's jargon, just a little plain old english. The blogs are informative because they tell us how we got where we are now, the forums are as varied as some information on rare side effects, and different medical tests to prayers and recipies. I'm sorry your feeling a little down, but because you were sick in 2009 instead of 2000, or 1990, your chances of a much more normal life are GREAT! I know it's hard to be patient, but everything in research is happening so quickly now, maybe you might be able to transplant with Soliris, some on this site are working toward that day, and some of us have to wait. Some of us now have options that are not as scary as our very few options of just a little over a year ago, and researchers are now getting the sections of the picture of AHUS instead of trying to find where this little piece of the puzzle fits, we are closer to seeing the total picture. So I encourage you to stay up on the latest research, educate yourself about your labs and dietary needs, research your meds, take very good care of that PD catheter! God bless you and have a very good holiday.

[Linda Burke]

Hi Alyssa,
Welcome to the interactive website of the Foundation for Children with Atypical HUS... we do have some adult patients online, despite our name. ;-D
As might be expected with two young sons diagnosed with aHUS, our family story is a bit long to relate, but Skyler and Hunter's information is on my page for anyone who cares to explore our background. The short version is that Skyler was diagnosed with factor H aHUS at just under 5 years old. Since we had lost his big brother Hunter just 10 months before Skyler's diagnosis, we had our terrific pedi nephrology team already in place.
Skyler was supposedly the 3rd aHUS patient in the world to try Soliris ..... he began it in April 2009 less than 2 weeks after his initial presentation with aHUS. It truly has been a miracle drug for us so far. Since Skyler got Soliris so soon after his first aHUS issues, he has no permanent kidney damage and no further health issues. Except for having an IV infusion of 300 mg of Soliris once every 2 weeks, and a daily 250 mg pill of amoxycillin as a mennigitis safeguard, Skyler has no BP or other medications nor any aHUS symptoms. Soliris was not mentioned as an option in May 2008 for aHUS patients considering a transplant. Needless to say, rather than losing Hunter to a failed kidney/liver transplant, we should have opted for a simple kidney transplant with Soliris as our 'ace in the hole' if the aHUS ever recurred. Everyone's family story is different, as aHUS is so variable, but we hope you find information that best suits your circumstance.
I'm hoping that you'll find support and insight here from the other aHUS patients and families- feel free to use the search bar above the cute colored 'bubble faces' to explore your interest areas. Sending you a hug along with best wishes, Linda Burke