The Atypical HUS Foundation

Anne Bruns
  • Female
  • Roy, UT
  • United States
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Anne Bruns's Friends

  • Katie Johnson
  • Kimberly Tressler
  • Diane schaller
  • Len Woodward
  • Vanessa Fawson
  • Rob P
  • Crystal Ferreira
  • Grace
  • Cheryl Biermann
  • Donna Kolp
  • Linda Burke

Anne Bruns's Discussions

FH auto antibodies
5 Replies

Ethan's genetic testing was clarified in Iowa that he has the FH auto antibodies instead of the FH mutation we thought he had. Dr. Nester talked briefly about how this specific type could be…Continue

Started this discussion. Last reply by Anne Bruns Dec 6, 2015.

Bone pain
7 Replies

Any patient experience severe leg bone pain? Ethan's right leg has been hurting for a few weeks now- chalked up to growing pains by his nephrologist. Definately could be, but this morning he could…Continue

Started this discussion. Last reply by Jennifer Christopher Mar 26, 2014.

 

Anne Bruns's Page

Profile Information

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 membership request involves business interests as I seek additional aHUS information for business applications.
cvn
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results, Factor H (CFH) /Protein (Gene)

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Anne Bruns's Blog

Pediatric Adventure in Orlando

Earlier this month, Ethan and I had the incredible opportunity to travel down to Orlando for the first aHUS pediatric event. This was for patients ages 10-18 and one parent. We arrived late Friday night and were treated to a delicious dinner with all the attendees, One Source case managers, Alexion and Global Genes staff. Upon arrival we were all given bags with items for the weekend and in the kids bags were the most adorable stuffed Husky dogs. Each patient got their own aHUSky named…

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Posted on October 29, 2015 at 8:12am

Columbus, Ohio Atypical HUS Meetup

Wow! That is all I can say after an incredible weekend in beautiful Columbus, Ohio with some of the greatest people I know - aHUS family! This was by far the largest meetup I've been to that was sponsored by Global Genes. Friday night was a delicious dinner with great conversation at each table. I was excited because I didn't know any of the attendees from beforehand. I met wonderful people of all ages and life experiences all brought together by one crazy life changing diagnosis. Each table…

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Posted on August 24, 2015 at 3:26pm

Atypical HUS Foundation Survey

Hello! As the new Atypical HUS Foundation Board moves into planning stages for next year and beyond, we would like your feedback on how we can better serve the aHUS population. Please visit this link to complete the survey. We will be collecting answers until August 1st. Please do not leave comments here as they will not be able to be included in the survey. Thank you for taking your time to complete this- our number one goal is to serve the aHUS community is the best possible…

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Posted on July 7, 2015 at 7:37pm

Salt Lake City Meetup

This weekend I had the opportunity to attend an aHUS meetup here in my own area. It was a smaller group but was just as effective in providing great conversation and building friendships. Except for one of the One Source case managers I had already met everyone at previous meetups or here at home so it was very much like a family reunion of sorts. In fact, I've had most of them to my house for an aHUS BBQ! :) I think we need another one!

Dr. Ruth McDonald is a fantastic pediatric…

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Posted on April 21, 2015 at 1:20am — 2 Comments

Comment Wall (4 comments)

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Join The Atypical HUS Foundation

At 10:33pm on February 3, 2014, Katie Johnson said…

I would love to meet also. I am fighting bronchitis right now so we should wait a little bit. I am free pretty much any day except Tuesday's.

At 10:07pm on March 19, 2013, Anne Bruns said…
Thank you so much! We are taking it day by day and counting those blessings.
At 4:19pm on March 18, 2013, Cheryl Biermann said…

hi, I've a 13 yr old with factor H related mutatuon, MCP also.  It is wonderful to know your docs have been proactively educating themselves and knew what to do!  For background, (to help you count your blessings!)  Take a look at the blogs of other patients, for medical info, and other treatments, terminology, ect. the aHUS Boot Camp is extremely valuable.  Sorry you are dealing with this, but joyful your son's journey will be so much better than most of us:)  welcome, we look forward to your participation.

At 1:13pm on March 12, 2013, Linda Burke said…

Hi Anne,

Welcome to the website - hope that it is a useful site of information and support.  I'm the mother of an 8 year old boy (also w/ factor H mutation like Ethan), and I'll be attending the April aHUS meeting in New Jersey (see Events Forum - travel stipend available to defray costs)....would love to connect there, if possible.

 
 
 

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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