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Cheryl Biermann
- Female
- Barnhart, MO
- United States
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Cheryl Biermann's Discussions
UNDER CONSTRUCTION Fistula vs. Catheter
Started May 21
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
Profile Information
- Birthday
- March 1
- Do you have a friend or family member diagnosed with aHUS?
- Yes
Cheryl Biermann's Photos
Cheryl Biermann's Blog
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
… ContinuePosted on July 8, 2010 at 6:52pm — 9 Comments
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
… ContinuePosted on June 26, 2010 at 11:41am — 3 Comments
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
… ContinuePosted on May 17, 2010 at 10:30am — 3 Comments
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
… ContinuePosted on March 31, 2010 at 9:50am — 3 Comments
fistula placement
Posted on February 8, 2010 at 6:15pm — 9 Comments
Comment Wall (14 comments)
- 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!!!
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...
• • • • • • • • • • • •
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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