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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Join The Atypical HUS Foundation

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.
 
 
 

IN REGARD TO MEMBERSHIP REQUESTS

To ensure proper processing of your membership, please make sure to set your email filters to accept emails, from info@atypicalhus.org.

The Atypical HUS Foundation is an all-volunteer organization. Please allow at least 72 hours for an email response confirming your membership request.  If you do not receive an email, please check your spam folder or email directly to info@atypicalhus.org

Membership is open to patients, family, friends, caregivers research and medical personnel.

WELCOME - JOIN US!

The Atypical HUS Foundation 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 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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