The Atypical HUS Foundation

Megan Russo
  • Female
  • Keuka Park, NY
  • United States
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Megan Russo's Friends

  • Jillian Ingram
  • Marilyn Cline
  • Lisa Grooms
  • sabrina molinari ,Isabella Pagan
  • Barbara Farcher
  • David H Deffenbaugh
  • Alyssa Deffenbaugh
  • Jill Ziegler
  • Grace
  • Linda Burke
 

Megan Russo's Page

Profile Information

Birthday
July 28
Do you have a friend or family member diagnosed with aHUS?
No
I am an adult aHUS patient.
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
n/a
My child ( or myself as a patient) is best described as:
Factor H (CFH) /Protein (Gene)

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Megan Russo's Blog

Challenges Across the Board

Hey everybody, It's been a long time since I've provided an update on how things are for me so I wanted to take some time to do that. This last quarter of the year, has undoubtedly been the hardest for me since being diagnosed. I've held on to faith and hope that treatment would keep me going but my circumstances have been less than ideal. 

I just ended my (hopefully) last fall semester of college, and it definitely gave me a run for my money. In October I was asked to be a…

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Posted on December 17, 2015 at 5:50pm

ASH Take Aways

Earlier this December I was honored to attend the ASH (American Society of Hematology) conference. I was blown away by the amount of people who attended and humbled to speak with doctors to gain information on the newest technologies for aHUS. The first day there we had a lot of doctors from other countries approach our booth who did not have access to treatment. The remainder of the event we had many doctors and researchers approach us that did not know the foundation existed. Overall, ASH…

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Posted on December 17, 2015 at 4:03pm

Following up - The Fight Isn't Over

Hi guys! I'm sorry that I have not been super active on the pages, life as we all know it has been crazy and very fast moving! I have gotten many emails over the past couple months, many from people asking how I am doing now, so I feel that it is only fair and appropriate to provide some updates as to where I am today. 

The last time that I wrote, I was a manager at a store called Chicos. I have since put in two weeks (months ago) and am currently a full time employee at an…

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Posted on May 24, 2015 at 10:32pm — 1 Comment

My Journey with aHUS

First off, my name is Megan, I am a college student, a dedicated worker, a sister, a daughter, a friend, and LASTLY a patient. I do not let aHUS define me and while I acknowledge that I have it and have limitations, I also don't let it control my life. I was diagnosed the summer of my sophomore year in college, and just finished my fall semester of my junior year. I typically take 18 credits, although this semester I only took 15. However I also have three jobs on top of my frequent doctors…

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Posted on December 15, 2014 at 9:00pm — 4 Comments

Comment Wall (4 comments)

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At 6:54pm on December 31, 2014, Jillian Ingram said…

PS:  Happy New Year!!

At 6:53pm on December 31, 2014, Jillian Ingram said…

Hi Megan,  Thank you for the invitation to your talk at your church in Bridgeton, NJ.  It is quite a distance from my location (75 miles) - otherwise I would have tried to make it.  Good luck with your presentation!  I believe it is important to educate other people about how a rare and potentially catastrophic illness affects your life.

At 10:28pm on December 13, 2014, Barbara Farcher said…

Hi Megan!! I am so glad you found this website! It is an incredible resourse.  If you'ren new to the disease, please check out the bootcamp, it answers lots of questions.  Feel free to ask questions, and tell your story.  Welcome :-)

At 11:07pm on December 12, 2014, Linda Burke said…

Welcome to the website, we hope you find this to be a source of support and information.

 
 
 

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.

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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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