The Foundation for Children with Atypical HUS

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

  • Crystal Ferreira
  • Deborah Deffenbaugh
  • Jill Ziegler
  • Lisa Goble
  • Grace
  • Jessica Olivia Frysz
  • Jodi Kayler
  • Svetlana Finley
  • Phyllis Ann Talbot
  • Linda Burke
 

Alyssa Deffenbaugh's Page

Latest Activity

Grace commented on Alyssa Deffenbaugh's video
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Rare Disease Day 2/29/2012- Alyssa's Story

"What  a great show of strength!"
Mar 1
Nicolas commented on Alyssa Deffenbaugh's video
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Rare Disease Day 2/29/2012- Alyssa's Story

"Wonderfull and thank you for this great video !"
Mar 1
Alyssa Deffenbaugh and Crystal Ferreira are now friends
Feb 29
Alyssa Deffenbaugh posted a video

Rare Disease Day 2/29/2012- Alyssa's Story

"Thank you so much to the aHUS foundation, you are our family and we couldn't have gotten through this without you!"-Alyssa and the rest of the Deffenbaugh f...
Feb 29
2 Comments
Jodi Kayler and Alyssa Deffenbaugh are now friends
Oct 10, 2011
Alyssa Deffenbaugh commented on Bill Biermann's event 2011 Parent Conference
"When I flew into Iowa, we flew in Moline, which was MUCH cheaper and then we just drove a car in. "
Aug 7, 2011
Alyssa Deffenbaugh is attending Bill Biermann's event

2011 Parent Conference at University of Iowa

October 7, 2011 at 6pm to October 9, 2011 at 7pm
SAVE THE DATE:The University of Iowa has graciously volunteered to host the 3rd "Atypical HUS Parent Conference" .   This is a great way to meet the top medical Professionals while socializing with parents at the same time. Here are the specifics:Friday, Oct 7th     Early Arrival  7:00pm  Meet and Greet                           Dinner sponsored by the FoundationSaturday, Oct 8th  The Confererence at the University of                              Iowa:  (All Meals Provided)Sunday, Oct 9th    …See More
Aug 7, 2011
13 Comments
Alyssa Deffenbaugh commented on Phyllis Ann Talbot's blog post A New Day after a LONG night - #'s are at the bottom of the note for all us AHUS nerds -and 300 mg of Soliris being infused today
"I am SOOOO happy to hear that Hyde got his new kidney, and doing well!! The labs look awesome, and its only up from here, I know it!! I'm 3 months out from my transplant, and still doing the soliris every other week! It's so great to hear…"
Feb 3, 2011
Linda Burke left a comment for Alyssa Deffenbaugh
"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"
Mar 28, 2010
Alyssa Deffenbaugh and Grace are now friends
Jan 23, 2010
Patricia Barresi commented on Alyssa Deffenbaugh's blog post Hello
"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…"
Jan 18, 2010
lisa ann peterson commented on Alyssa Deffenbaugh's blog post Hello
"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......"
Jan 2, 2010
Jill Ziegler commented on Alyssa Deffenbaugh's blog post Hello
"Hey my friend!!!! I love you!! I am going to call you today. Happy New Year sweet pea!"
Jan 1, 2010
Grace commented on Alyssa Deffenbaugh's blog post Hello
"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…"
Dec 31, 2009
lisa ann peterson commented on Alyssa Deffenbaugh's blog post Hello
"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…"
Dec 29, 2009
Alyssa Deffenbaugh is now friends with Svetlana Finley and Lisa Goble
Dec 29, 2009

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

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 (3 comments)

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Join The Foundation for Children with Atypical HUS

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.
 
 
 

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 "aHUS Bootcamp" and "About aHUS" tabs 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 2011 genetic testing and treatment.

************************

NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

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...

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.



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