The Atypical HUS Foundation

Cheryl Biermann
  • Female
  • Barnhart, MO
  • United States
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Cheryl Biermann's Friends

  • Rebecca D. Hart
  • Lisa Reed
  • Didi Kirsten Tatlow
  • Larry (chip) Pruden
  • Alicia Gonzalez
  • Kerry  Waters
  • Cassie Langdon
  • Thomas Nowacki
  • Jennifer Schroeder
  • Kenneth wei
  • Brian
  • Rebecca Beusse holman
  • Anne Bruns
  • Dustin G. Wiggins
  • Kimberly Lancaster

Cheryl Biermann's Discussions

Regular HUS

Started Jul 21, 2013

Therapy Forum

Started Apr 4, 2013

home health infusions for Soliris
25 Replies

Started this discussion. Last reply by Cheryl Biermann Feb 13, 2013.

 

Cheryl Biermann's Page

Profile Information

Birthday
March 1
Do you have a friend or family member diagnosed with aHUS?
Yes

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Cheryl Biermann's Blog

St. Louis Meetups with The aHUS Foundation and Global Genes, 2015

St. Louis Meetup

at the

Ballpark Village Hilton

          I have to admit to…

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Posted on June 14, 2015 at 3:30pm — 3 Comments

Reporting Adverse Reactions

Hi all, today I wanted to share with you something that has been popping on via the fb closed page.  It seems many people are having severe migraine headaches which they are attributing to Soliris, since it is a noted, common side effect.  That may be the case, but please report these to your One Source Nurses. 

One of the things that is made clear by following the discussion threads over several months is that the timing between the headaches and the infusions are all over…

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Posted on April 24, 2015 at 1:02pm

aHUS Meet Ups

I want to take a moment to encourage everyone to make at least one aHUS Meet Up this year...now, it's early in the year, all involved have worked hard to make these events affordable, educational and a place for a tremendous outpouring of support.

Even if, like us, you battled years alone, you got this, ect. you deserve this opportunity.  People used to tell us, "Take a break.", "Get a manicure.",  "Go out to eat, we'll watch the kids." , "Get out of that hospital for…

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Posted on April 8, 2015 at 2:51pm — 1 Comment

Silent Rippling Circles

When we blog an aHUS Awareness piece or a Season of Giving blog our musings reach our own small circle of friends, when we share our friends pieces our circle inter locks with another circle of friends' ripples! Let's fill an ocean with interlocking ripples! Join the aHUS Team, blog and share! Let's reach our December goal! Go Team!

Posted on December 2, 2014 at 11:07am

Sheraton Hotel, Iowa Cty, Iowa - 3193374850

The Sheraton offers upon request refrigerators and cribs at no extra charge. For any other questions about your rooms, please call the number above. The staff is friendly and helpful.

Posted on October 18, 2014 at 11:40am

Cheryl Biermann's Videos

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Comment Wall (61 comments)

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At 5:28am on September 9, 2016, Rebecca D. Hart said…

Thank you Cheryl.  My son was 24 years old in 2013 when he was diagnosed with severe cardiomyopathy, congestive heart failure, and atrial fibrillation.  He was working on his Master's Degree in Public Administration.  He did an internship during the summer and could barely get through the day.  He suffered severe headaches and fatigue.  In September he was diagnosed with heart disease.  He had an ejection fraction of 10% and the cardiologist said he did not know how he was walking around.  He then had a 3 year journey of hospitalizations for heart disease, AICD placement, multiple cardioversions, two ablations, and finally was listed for transplant.  He got his transplant on June 30, 2016.  Then began complications with kidney failure.  Finally a diagnosis of aHUS was made.  I had never heard of aHUS and most of the nurses and staff had not heard of aHUS either.  He underwent plasmapheresis and began Soliris treatment but on August 4 he died from massive bleeding from multiple areas.  He was given an unheard of 165 units of blood products in about a 14 hour period.  He was 27 years old at death.  We were blindsighted by this disease and so were his medical team.  Even though it is rare, I just think there should be more awareness that it exists. Thank you.  Rebecca Hart

At 8:05pm on July 3, 2016, Judy Trynosky said…

Cheryl, sorry about calling you Lisa, but same message applies!  I cut/pasted this comment.  Still hoping to see you in Denver. Judy Trynosky

At 8:03pm on July 3, 2016, Judy Trynosky said…

Lisa, I can't tell where you live, but are you planning to come to Denver?  There are so very few adult patients, I would love to meet you and any other adult pts.  Please let me know.  Judy Trynosky

At 1:41am on June 15, 2015, Leslie singh said…
Hi Cheryl, thanks for the welcome!
At 8:39pm on January 19, 2015, Janet DeThample said…
Hello Cheryl! Thanks for the welcome!
At 8:08pm on January 13, 2015, Clifford Coonan said…

Hi Cheryl,

Thanks for the welcome message. It's only been one day and already I'm finding the support on the site extremely helpful, a massive relief. We are about to see the hematologist and two nephrologists here at the Hong Kong Sanatorium hospital and they were planning to reach out to Dr Goodship and Dr Thomas. They have also sourced Soliris locally, which is encouraging. I'll stay in touch, and again, thank you all for this fantastic resource.

Clifford

At 5:38am on March 19, 2014, Cassie Langdon said…
Hello Cheryl, thank you :)
At 11:07pm on February 24, 2014, Linda Burke said…

I'm sure that you'd like to give new member Karla a big welcome!

:-D

At 5:36pm on November 23, 2013, Joy Lewis O'Brien said…

Hi Cheryl, I haven't forgotten your question. I changed jobs away from the research hospital so haven't had access to my journal database since April...But I'm working to get it reestablished! As soon as I can get connected I will look it up. 

At 2:51pm on November 19, 2013, yael ripstein said…
It's good to be here
I found the weekend in Chicago very informative and really special
The question I want to put out there is has anyone gone on a renal diet and has it helped did it bring down creatnine
It had been brought up to me I want to find out if anyone benefitted from it
Thanks
Yael Ripstien
 
 
 

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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