The Foundation for Children with Atypical HUS

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

  • Martin Martinović
  • Len Woodward
  • Vicki Provan
  • Margie Siegel
  • Kaye Vaughn
  • Danna Vaughn
  • greg wiatroski
  • TAMARA FERNANDEZ MEGIAS
  • Ryan Still
  • debbie thelwell
  • Jan Mizikacioglu
  • Jaime Lauck
  • Rob P
  • Carine V
  • Mary Lee Neuberger

Cheryl Biermann's Discussions

Taking the dread out of the hospital visits
1 Reply

Started this discussion. Last reply by debbie thelwell Jan 18.

kidney stones

Started Sep 26, 2011

Transitioning
5 Replies

Started this discussion. Last reply by Cheryl Biermann Jul 27, 2011.

 

Cheryl Biermann's Page

Latest Activity

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Cheryl Biermann replied to Michele Haymes's discussion 'Anti Factor H Antibodies'
I googled the question and according to web sites, Soliris is effective in Factor H antibodies.  
38 minutes ago
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Cheryl Biermann replied to Michele Haymes's discussion 'Anti Factor H Antibodies'
Hi, Welcome here. So glad to hear Jeremy is doing better.  Hugs for you too, it's not an easy disease to wrap your brain around!  Although I am not sure, I think this is something that can also be treated with the new treatment,…
45 minutes ago
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Cheryl Biermann commented on Kerri Grey's blog post 'No Title'
Hi, Kerri!  I bet they were all happy when you brought Ollie home!  Let them help! 
1 hour ago
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Cheryl Biermann commented on Phyllis Ann Talbot's blog post 'Home (for now) and happy Kidneversary!'
Thanks for all the detail!  Looking forward to our update in 7 months!  Love you guys!  Here's to popcicles, ice cream and lots of salty snacks, oh yes, and a 16 oz. toast of kool-aid, cheers and many more anniversarys to come,…
Feb 2
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Cheryl Biermann commented on Melissa Hearn's blog post 'Pictures of AHUS kiddos PLEASE'
Can we email them Melissa?  I just sent some to Bill this way for the st
Feb 2
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Cheryl Biermann replied to Bill Biermann's discussion 'Post Soliris and/or Post Transplant by the numbers'
Haven't posted in a while, but for anyone following along to see what happened after his increase from 600-900mls, to platelets especially, here are todays numbers. The platelets had gone back up to the 220s, (his norm), but have…
Jan 31
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Cheryl Biermann left a comment for Sarah Brammer
Well, it's about time, girl!  You're now officially a member, welcome to site and our bigger family! <3  
Jan 31
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Cheryl Biermann replied to Bill Biermann's discussion 'Is there such a thing as "Atypical HUS Free" or "Remission periods"'
that is a really good idea, Carrie.  Our biomarkers aren't very sensitive at this point though but it has been a good long time since you've had a major issue, do you have a list of the tests theyi are doing?  They think…
Jan 31
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Cheryl Biermann replied to Linda Burke's discussion 'Soliris'
We've seen it!  People working with us sent the link last week, and it is wonderful, I reposted to fb and emailed everyone I know who would actually watch it.  It is great to actually hear these stories of success before the child has…
Jan 30
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Anna's update

Svetalan told me yesterday that Anna appeared to be getting better and they were just waiting for some labs, things seemed to be semi normal with them being watchful.  Last night, however, Anna had such severe back and stomack pains so they took her to their local hospital and waited four hours.  The only thing they did was to suggest vicaden.  Anna will be seing her nephrologist in the morning.  For those of you who may not know Anna often had back pain associated with her aHUS, so they are…See More
Blog post by Cheryl Biermann Jan 29
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Cheryl Biermann commented on Phyllis Ann Talbot's blog post 'Back in the hospital and the 'bad' anniversary'
Just get him and Ruthie and up and down bed!  Seriously, I think Nathan actually misses them, he fondly talks about how well he slept when he was in the hospital all the time.  Mom when you can raise your head a little, without bending…
Jan 29
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Anna Finley's on her way to Portland

Anna's mother reports she is having strange purple spots and that the labs indicate some blood in the urine, they are taking platelet counts and hoping to begin Solaris. Svetlana and her family woul appreciate prayers.
Blog post by Cheryl Biermann Jan 27
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Cheryl Biermann left a comment for Kim Wellman
Hi Kim, welcome to the ahus family. We hope you find answers' inspiration and comfort here on our pages. Feel free to join a discussion or begin one of your own.
Jan 27
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Cheryl Biermann replied to Lisa Barker's discussion 'Seminar at House of Parliament Jan 17th'
Thanks Lisa,   If anyone is aware of video, you can let it be known we would love to add it here and on the rare disease platform also!
Jan 20

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

Cheryl Biermann

Anna's update

Svetalan told me yesterday that Anna appeared to be getting better and they were just waiting for some labs, things seemed to be semi normal with them being watchful.  Last night, however, Anna had such severe back and stomack pains so they took her to their local hospital and waited four hours.  The only thing they did was to suggest vicaden.  Anna will be seing her nephrologist in the morning. 

 

For those of you who may not know Anna often had back pain associated with her…

Continue

Posted on January 29, 2012 at 10:00am

Cheryl Biermann

Anna Finley's on her way to Portland

Anna's mother reports she is having strange purple spots and that the labs indicate some blood in the urine, they are taking platelet counts and hoping to begin Solaris. Svetlana and her family woul appreciate prayers.

Posted on January 27, 2012 at 12:29pm

Cheryl Biermann

Are there any Cardinal Fans out there?

 

        SUPPORT THE FOUNDATION FOR CHILDREN WITH ATYPICAL HUS FOR AS LITTL AS $5

 

Hi again...it's that time of year for The Foundation for Children with Atypical HUS, St. Louis.  This might be a long shot, but I know the Cardinals have far reaching fans.  This year you may want to participate in our raffle, it is chance to win

a David Freeze autographed and framed picture of his walk off home run this year OR third prize, a Whitey Herzog ouautographed…

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Posted on January 18, 2012 at 9:40am

Cheryl Biermann

This is a link to a story related to kidney transplant and it really got my fire up, I thought others here might share my view and want to sign a petion helping this family.

I you go to the link, you will find a story, that I cannot believe is happening in this country, especially because the family is willing to be the donor.  There is a petition to sign as well.  I'm not normally too much of an acivist, but I think we all can see the value in a kidney transplant  for anyone dealing with the hardships of kidney failure.…
Continue

Posted on January 15, 2012 at 12:10pm

Cheryl Biermann

Merry Christmas everyone!

Many of our population often come down with something this time of year and are stressed about not being at home when there is such an effort on everyone's part to make memories and spend time with loved ones.  So my proposal is everyone offer a little prayer and send your thoughts heavenward that we all stay well or get well in time to enjoy this wonderful season.  If any of you find yourself in a bad health situation, please let us know and we will flood you  with prayers and…

Continue

Posted on December 16, 2011 at 11:08am — 4 Comments

Comment Wall (41 comments)

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Join The Foundation for Children with Atypical HUS

At 3:31pm on January 13, 2012, Martin MartinovićMartin Martinović said…

Dear Cheryl,

thank you for the welcome and I hope that our friendship will be for the mutual benefit.

Best Regards

At 4:02am on January 12, 2012, Martin MartinovićMartin Martinović said…

Thank you! I visit the web site you recomended me, it is also interesting. I am glad that I can communicate and share expirience and problems to you and others peoples, it is much more easier to live with it. I will continue to communicate with you at this site. I apologise for my gramatic mistakes. See you

At 6:01pm on January 3, 2012, Kathleen McGregorKathleen McGregor said…
Thank you for the welcome. I am glad they have made progress with this disease.
At 7:53pm on December 23, 2011, Kaye VaughnKaye Vaughn said…

I received and accepted your invitation to become a friend. I have been exploring the foundation's website since during the time in August when Hannah was in ICU for so long, and I have forwarded information and links from it to Hannah's doctor. It's a wonderful resource.

I was especially interested in the information you sent Danna. Is there a place we can see the latest thinking about aHUS and continuing Solaris? I see on their own website references to when Solaris is discontinued, but I see nothing at all about recommendations of exactly when or even whether Solaris is to be discontinued or the frequency of infusions drastically reduced.

With the drastic changes in the outlook for patients now that Solaris has been approved, where is tracking being done about the course of treatment and outcomes, relapses, and resumption of treatment?

Was there a study that found that even with Solaris treatment, the disease remains there, more or less lurking and ready to become active if the drug is reduced or stopped?

At 11:54pm on December 22, 2011, Kaye VaughnKaye Vaughn said…

Hi Cheryl, I'm Kaye Vaughn, grandmother of Hannah, the aHUS patient, and mother-in-law to Danna Vaughn with whom you have corresponded recently. I'm interested in a reply you sent Danna recently regarding the current thinking on staying on Solaris and about scientists thinking there is low-level activity that cannot be detected. I would very much like to read all about that. Can you please share the source? Hannah was originally scheduled to begin taking Solaris less frequently in February, but her physician is at this point undecided about reducing the frequency. Thank God, Hannah continues to do very well with her infusions and is generally thriving.

At 12:36am on December 15, 2011, Linda BurkeLinda Burke said…

Just checking in to see how Nathan's been doing - hope things are settling down a bit after the infusion.

At 3:25pm on November 23, 2011, Ryan StillRyan Still said…

Hey cheryl hows nathan doing?

At 11:31am on September 19, 2011, Margie SiegelMargie Siegel said…
Hi Cheryl!  No, I can't find you on FB.  Maybe you can find me!!!  Margie Chazen Siegel.  Hi to Mr. Nathan!!!
At 10:22am on September 1, 2011, Danna VaughnDanna Vaughn said…

Thank you! On the front end, it doesn't look like there is anything to be "at ease" with! Soooo, knowledge is power. I appreciate your willingness to share your experience.

 

At 4:20pm on August 24, 2011, Ryan StillRyan Still said…
Hey Cheryl I see Nathan has a page
 
 
 

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 "About aHUS" tab 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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