The Atypical HUS Foundation

Alyssa Deffenbaugh
  • Female
  • Rochester, NY
  • United States
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Alyssa Deffenbaugh's Friends

  • Megan Russo
  • Barbara Farcher
  • Crystal Ferreira
  • Deborah Deffenbaugh
  • Jill Ziegler
  • Lisa Goble
  • Grace
  • Jessica Olivia Frysz
  • Joy Lewis O'Brien
  • Jodi Kayler
  • Svetlana Finley
  • Phyllis Ann Talbot
  • Linda Burke
 

Alyssa Deffenbaugh's Page

Profile Information

Birthday
July 31
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My child ( or myself as a patient) is best described as:
Factor I (CFI)

Alyssa Deffenbaugh's Videos

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Alyssa Deffenbaugh's Blog

aHUS Baltimore meet-up

This was such a wonderful weekend and a great experience in Baltimore for those in attendance at the meet-up.  I was lucky to meet a few other patients, and some amazing caregivers.  I'm always so blown away by the sense of community we all have and how much we all have to bring to the table.  The hotel was beautiful, and I had never been to Baltimore, so it was exciting to finally get to see the great city! 

Friday we had dinner, which was delicious!  We also got to hear Diane…

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Posted on July 28, 2015 at 12:16pm

aHUS Across America: Your State’s Video Clip Entry

Hello Everyone! My name is Alyssa Deffenbaugh and I am hoping to put together an video for Rare Disease day with all of us aHUS patients.  I am basing my idea on a video that Jimmy Fallon (NBC televsion:  Late Night with Jimmy Fallon) put together during the Superbowl last year – the campaign was called ‘Subs Across America’ and featured Subway Footlong sandwiches.  If sandwich lovers can grab the spotlight, why not not ask the aHUS community to raise Rare Disease Day awareness with…
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Posted on January 15, 2015 at 2:56pm — 8 Comments

Hello

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… Continue

Posted on December 27, 2009 at 12:50pm — 10 Comments

Comment Wall (4 comments)

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At 9:51am on December 4, 2012, Linda Burke said…

Hi Alyssa,

We just began a newly featured forum for adult aHUS patients, if you'd care to check it out.  Hope all is well with you and your family!

 

'Our thanks to Jennifer Christopher for starting this important aspect of outreach and discussion among aHUS adults!  Her insight has highlighted a need for a dedicated 'Forum for Adult aHUS Patients', so please visit our newly featured forum for adult aHUS patients to share their journey and to post concerns and questions.

Join the conversation at http://atypicalhus.ning.com/forum/topics/adults-with-ahus .'

At 9:55pm on March 28, 2010, Linda Burke said…
Hi Alyssa,
Just a note to say hello and ask how things are going at your end....hope things are in a smooth period for you! Best wishes, Linda
At 5:48pm on December 28, 2009, Heather Still said…
Welcome to the site, Alyssa. I hope that you find some answers to your questions. There are a few adult aHUS patients on this site, one being my sister Desiree Mayne. She was diagnosed 8 years ago (28 yrs. old) and after 3 years of hemodialysis she had a successful transplant and is a fellow upstate NY resident. Her diagnosis was post partum aHUS with Factor H, MCP, and Factor I mutations. My son, Ryan, has also suffered from aHUS for 7 1/2 years. We are here to help with any questions you may have. Good luck with everything.
At 4:46pm on December 27, 2009, Lisa Goble said…
welcome to the site, alyssa! hoping you find the answers you need and the support of people who know what you are going thru. good luck on your testing. will be praying for you. keep the faith, luv.
 
 
 

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