The Foundation for Children with Atypical HUS

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

Fund Raising Basics UNDER CONSTRUCTION!

Started this discussion. Last reply by Cheryl Biermann Mar 11.

Blood Drives
3 Replies

Started this discussion. Last reply by lisa ann peterson Nov. 4, 2009.

 

Cheryl Biermann's Page

Latest Activity

Thank you for putting together this summary, Linda. The hope we all have for the future of our loved ones was definitely increased after speaking with and hearing the commitment of the Alexion team.
yesterday
Hi, Kamal, If you follow the patients who are receiving Eculizimab, (Soliris), there are patients who have no known genetic mutation but have had wonderful success in preventing further damage to their kidneys and other organs. Based on this, I thi…
yesterday
How exciting, Jessica!
yesterday
Zofia, I am happy to hear she is so stable and that her numbers are fantastic! Happy birthday Ania!
on Monday
Happy Birthday, Ben! Congratulatons on beginning kindergarten, you'll have so much fun learning new things, I'm sure you will amaze everyone when you learn braille! When I was homeschooling my children, my daughter was in kindergarten and it took he…
on Sunday
I can't believe his bun! That's so awsome on peritoneal, doesn't he eat a lot of protien? You guys are doin great on those labs! Ruthie seems like my Katie, who started HS last year and had to catch the bus at 6:20-she was waking up at 4:00 to do a…
August 27
Am Idol concert of last year's top 10; not the show. The last three performers were awsome. Nathan ended up skipping, he shouldn't have.
August 26
Give me patience, I "get"to take Katie and Nathan to an American Idol event here tonight, thanks to Dream Factory! Hope it's entertaining.
August 25
Hi all. Yes, we were in contact with Taligen as recently as maybe 2 1/2 years ago. We did some work for them regarding patient's genetic testing. They were quite excited to get the information, although we were no where near done when the news abou…
August 25
Although I am certainly not an expert on transplants, I can tell you if you come here to the states, you will need to plan on spending at least a year in our country, maybe it won't take that long though. I've never heard of anything even with a ded…
August 24
August 23
August 23
August 23
I'm happy they are talking with the doctors in Iowa and Canda! I also, have never heard of being able to predict if the aHUS will be mild or not-obviously, his body took a tremendous hit last time. Maybe what they mean is they believe he will be ver…
August 23
Good news & sad news. We had our transplant mtg. & paperwork is begining. Sad news, our bunny, FooFoo died. Nathan's crushed, so sad.
August 22
I'll ask the nurses where the studies are on oxygen and forward the information on to you. You could print them out, and pass them out to everyone-don't they offer a social worker for you? Here in MO. they do, my friend is a social worker in adult f…
August 22

Profile Information

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

Cheryl Biermann's Photos

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Cheryl Biermann's Blog

Cheryl Biermann

Nathan gains a small victory!

When Nathan was approximately three years old, we had to give him dairy creamer for his calorie intake as he refused anything else, even ice cream! We had to put in a g-button feeding tube. This was the best we could do at the time and slowly over time he began to eat socially. Never enough to sustain life. He often went weeks without taking a single bite of anything.



Almost two years ago, it was decided he needed to grow both inside and outside. After consideration, the doctor

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Posted on July 8, 2010 at 6:52pm — 9 Comments

Cheryl Biermann

National Kidney Foundation Walk




Nathan and his friend, carry the Cardinal Glennon Banner which includes names of all the children being treated with some form of kidney d

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Posted on June 26, 2010 at 11:41am — 3 Comments

Cheryl Biermann

MRI and Contrast

EMERGENCY- NOTICE!



Do NOT allow and MRI with dye! Plain MRIs are fine, useful for detecting damage following a stroke or seizure. They dye in these tests, (sometimes called and MRA), is not able to be excreted in any person with kidney failure!



There are many reasons for receiving an MRI, those of you with seizure complications may have more reason for an MRI than others.



The agent Gadolinium a non-radioactive agent that allows a clearer picture fo

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Posted on May 17, 2010 at 10:30am — 3 Comments

Cheryl Biermann

The Pirates Made off with Nearly $20,000, March 20, 2010!

Pirates Make off with Nearly 20K!



Pirates of the St. Louis Area converged on the Carpenters' Hall, March 20, 2010 and made off with nearly 20K, say participants in an event which included a live auction, which included everything from a vacation in Branson, Mo. and a hockey jersey signed by the entire Blues team, to dancing lessons and a silent auction of everything from new children's books to an ent

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Posted on March 31, 2010 at 9:50am — 3 Comments

Cheryl Biermann

fistula placement

Here we go, Friday Nathan has his fistula placement for a safer dialysis line, like Phyllis, I'm worried about the what-ifs, too many experiences where the exception was the rule...today, he had a seizure due to low potassium. (probably). The last thing you want to worry about before surgery, but I'll count blessings too, he's not sick and his weight is good! The seizure was pretty minor as they go, but I'm a worrier. Wish us luck!

Posted on February 8, 2010 at 6:15pm — 9 Comments

Comment Wall (14 comments)

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At 6:08pm on August 23, 2010, Dana M Simone said…
Thanks, Cheryl ...I've perused yout website frequently in the 3+ years since my son, Jack, was diagnosed with Atypical HUS. He is 17 now and has been on dialysis since May 2007. I was thrilled to find that a forum for families / friends has been created....thank you!
At 9:20am on July 6, 2010, Bonnie L. Randall said…
Thank you --Yes I am really pround of his brother Joey--he takes thing very seriously
and is constantly study things over the internet to help. Yes Kelley went back for more soliris on Friday---he looks so much better now. I'm praying it will last. It is planned at this
time for him to every two week for soliris.
At 4:09pm on July 2, 2010, Bonnie L. Randall said…
Thanks my grandson is Kelley Krug--I see his father and brother use this site also. He
went back for soliris today at Iowa City---it is his 3rd dose---I pray he continues to do good.
At 5:36pm on June 22, 2010, Abrahim Saleh said…
Hi. My nephew, Abraham has atypical HUS and he has had it for 5 years now. I am a concerned aunt and want to know what are his options. It is difficult since he lives in Birmingham, AL and I live in Buffalo, NY. I am constantly asking questions of my sister and it seems she is afraid to try anything else for fear of what the result might be. I read about the soliris (thanks for the info. by the way) and am wondering how successful it is and if it may be a possible treatment for Abraham. I hope my sister will be more open-minded as I present her with different options. Currently Abraham gets frozen plasma tranfusions every 2 weeks. What other treatments are out there for this rare disease?
At 4:55pm on May 14, 2010, Sylwia Antkowiak said…
Hi Cheryl,
I hope we will soon have more successful attempts. We are on the soliris list for the trials on pediatric patients that are supposed to start this year. Then we will go on the waiting list as I cannot be a donor having the same CFI mutation. My doctors are investigating whether the cross blood transplat would be possible with drug called rituximab involving my husband who is type A while Maya is O. How about you Cheryl, what are the plans for you little son, are you thinking about the transpant with soliris as well. All the best. Sylwia
At 8:17am on May 10, 2010, Elizabeth Farrell said…
Hi Cheryl
Thanks for your response. Exactly as you suggested, we were told also that although these genetic tests might be negative it probably means there is a defect in a component they don't yet know to test for.All a bit of a minefield really!I will checkout the research you suggested. Thanks. Liz
At 3:53pm on May 6, 2010, Elizabeth Farrell said…
Thanks for your welcome Cheryl. I'm afraid I blabbed on a bit in my response to Linda so I will just say - this is a lifeline! To find other people who know what this is all about and can understand the anxiety and feeling of being "in limbo" - not knowing what is going to happen in the future - is sadly very comforting. We have felt very alone and confused for 2 years now and this is the first positive website I have found! Thank you!
At 12:43pm on May 4, 2010, Peg Reilly said…
Thanks for the welcome greeting. Peg
At 12:26pm on April 29, 2010, Lisa Beardmore said…
Hi cheryl thank you for your post. There isnt much testing going on in england so i can only go on what is available unfortunatley. They cant test my daughter because thy have never proven my HUS they dont know where to start testing on my daughter its really complicated and i didnt show signs till i was 24 so will just monitor her closely for now. I havent peed since my kidneys failed 6 years ago (apart from my transplant when it worked for 2 weeks) so im on a 1 litre fluid restriction which i really struggle with. x
At 1:19am on April 29, 2010, Svetlana Finley said…
Great news on fistula!!!
 
 
 
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 2010 genetic testing and treatment.

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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