The Foundation for Children with Atypical HUS

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

Service Award
2 Replies

Started this discussion. Last reply by Linda Burke 11 hours ago.

Fund Raising Basics UNDER CONSTRUCTION!

Started Feb 25

Blood Drives
3 Replies

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

Cheryl Christine Pallme Biermann's Events

 

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Latest Activity

Linda Burke replied to Cheryl Christine Pallme Biermann's discussion 'Service Award'
Sounds like a wonderful school environment for Nathan, and his district-wide Service Award recognizes Nathan's ability to transcend his personal trials in favor of enriching the lives of others. Way to go, Nathan... you make us all proud!
11 hours ago
Grace replied to Cheryl Christine Pallme Biermann's discussion 'Service Award'
Congratulations Nathan!!! What a great way to empower kids!
yesterday
Cheryl Christine Pallme Biermann left a comment for sally rakes
yesterday
Cheryl Christine Pallme Biermann added a discussion
Service Award
Nathan is fortunate to belong to one of the best public school systems in Missouri, the Fox C-6 District, which has also been a National District of Excellence for several years in a row and a Missouri District of Character.  His, Antonia Elementary…
yesterday
Cheryl Christine Pallme Biermann commented on sally rakes's blog post 'My beautiful Daughter Destiny'
Hi Sally, it's good to hear your story;though heart-breaking. I would like to assure you that MOST times the first attack is the worse-the doctors are on top of it as soon as they see things going south. You've been through the wringer, now, hopeful…
yesterday
Cheryl Christine Pallme Biermann commented on Amy Swarbrick's blog post 'Holding Strong'
how nice Amy...I guess that means you'll be sending us more little cute Brody and baby chick pictures for Easter, I hope?
on Friday
Cheryl Christine Pallme Biermann left a comment for Susan Bauer
March 2
Susan Bauer is attending Cheryl Christine Pallme Biermann's event
March 20, 2010 from 6pm to 11pm
Ten rounds of trivial pursuit with zany entertainment and audience participation. Silent auction closes after the sixth round of trivia. Oral auction following the ninth round. Silent auction consists of usually over 100 baskets/large items. Oral au…
March 1
Cheryl Christine Pallme Biermann replied to Kamal D Shah's discussion 'Is this aHUS?'
As usual, Linda has given a great place to begin your journey with this little boy. I think another route you can take is to talk with parents of children who have been treated with steroids.The doctors talking to each other is not going to give you…
March 1
Cheryl Christine Pallme Biermann commented on Zofia's blog post 'FDA grants Orphan Drug Designation to LFB’s « Complement Factor H »'
Way to go Zofia, it's amazing you found this information, excellent! Let us know any further developments. Thanks.
March 1
Cheryl Christine Pallme Biermann left a comment for Christine Boyer
March 1
Joy Lewis and Cheryl Christine Pallme Biermann are now friends
February 28
fistula lookin good-lookin at zonisimide levels & potassium before & after dialysis to see why break through seizures happened.
February 26
Cheryl Christine Pallme Biermann added a discussion
Fund Raising Basics
UNDER CONSTRUCTION AND ONLY FOR VIEWING AT THIS TIME-WILL NEED TO BE REVIEWED   As our progress is leaping forward due to all of the new and exciting research gains within the past couple of years and the advent of this wonderful interactive site, a…
February 25
Heather Still commented on Cheryl Christine Pallme Biermann's event 'The Atypical HUS Annual Trivia/Auction'
It's a totally awesome fundraiser!!! I wish I lived closer so I could get there every year. Good Luck.
February 25
Cheryl Christine Pallme Biermann left a comment for Sharon Schardan
February 25

Profile Information

Birthday
March 1
Do you have a friend or family member diagnosed with aHUS?
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Cheryl Christine Pallme Biermann's Blog

Cheryl Christine Pallme 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

Cheryl Christine Pallme Biermann

Now What? Jodi Kayler & Cheryl Biermann

Atypical HUS 101 (from a Parents’ Perspective)
So the doctors have diagnosed your child with Atypical HUS, now what?

So, you or your child's symptoms have led you to the doctor or straight to the hospital. Symptoms may have included extreme fatigue, puffiness, vomiting, paleness, fever, and perhaps some diarrhea. It is possible that you noticed swelling as well as dark or strong smelling urine. Your child's appetite may have completely vanished and you are struggling to get them to eat.… Continue

Posted on January 13, 2010 at 5:55pm — 5 Comments

Cheryl Christine Pallme Biermann

Just when you think you know everything there is to know about Atypical HUS

Did you know there is a condition which could possibly be brought on by high volumes of receiving blood products or steroids, Ivig, Pregnasone (sp?) that could lead to a condition called Chorea, (sounds like Korea) which is linked to Lupus...

This condition is called Chorea, it is the small jerking movements of the arms and legs which can get worse over time and become twisting movements, children often disguise their jerky movements by scratching or rubbing as if the whole thing was intentiona… Continue

Posted on December 17, 2009 at 3:17pm — 8 Comments

Cheryl Christine Pallme Biermann

You won't believe this story!

My friend has a child, 15, who began coming in her room at night with a terrible fear of dying-a so far very healthy child, select sports, good grades, these fears escalated within a few days to full-out panic attacks. She takes the child to the Dr., who agrees it probably is panic attacks, but is a young doc and wants to make sure this is all, so he sends her to a children's hospital who after an echo, diagnoses a heart condition, the one that goes undetected for years and suddenly the child wi… Continue

Posted on December 14, 2009 at 2:02pm — 3 Comments

Cheryl Christine Pallme Biermann

see dialysis forum

Because the forums have been a little bit quiet lately, I thought I'd let everyone know there's new information on the dialysis forum about low H&H treatments. Thanks!

Posted on December 2, 2009 at 7:28pm —

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About

Christy White Christy White created this Ning Network.
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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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