The Atypical HUS Foundation

Rebecca Beusse holman
  • Female
  • Denver, CO
  • United States
Share on Facebook Share
  • Blog Posts
  • Discussions (2)
  • Events
  • Photos
  • Photo Albums
  • Videos

Rebecca Beusse holman's Friends

  • Kimberly Tressler
  • Cheryl Biermann

Rebecca Beusse holman's Discussions

Fetal Protein Level
2 Replies

Fetal Protein Level is a measurement in the blood of a pregnant woman which can show abnormalities in the fetus.  Our son's wife showed a raised FPL during her first pregnancy.  That baby was…Continue

Started this discussion. Last reply by Rebecca Beusse holman May 25, 2014.

 

Rebecca Beusse holman's Page

Profile Information

Birthday
June 1
Do you have a friend or family member diagnosed with aHUS?
Yes
Are you medical personnel or an aHUS researcher with an interest in aHUS issues?
No
My membership request involves business interests as I seek additional aHUS information for business applications.
No business interests.&
My child ( or myself as a patient) is best described as:
Tested but Awaiting Results

Comment Wall (6 comments)

You need to be a member of The Atypical HUS Foundation to add comments!

Join The Atypical HUS Foundation

At 11:19pm on September 2, 2013, Cheryl Biermann said…

How wonderful to hear Piper is responding to Eculizumab!  Don't be concerned about the lack of a gene marker, about half of aHUS people are also not specified.  Diagnosis is still mainly made by doctors from symptoms as the genetic testing is too slow to decide if it is aHUS or not, sometimes, however, the testing may indicate a slightly different treatment.  Thank you for sharing the good information, bless you and the rest of Piper's family.

At 11:15pm on June 6, 2013, Kimberly Tressler said…
How old is Piper. How is she doing now?
At 9:16pm on June 6, 2013, Kimberly Tressler said…
Lily is 11 almost 12, her birthday is at the end of the month. She was just diagnosed this past fall when she ended up in the PICU.
At 9:45am on May 17, 2013, Cheryl Biermann said…

It's good to welcome you here, I hope the information compiled here gives you some comfort, knowing there is so much information availabe now when just a few years ago this was a dark and lonely road.  Now we have a lighted path and friends to help us.

At 2:50pm on May 16, 2013, Kimberly Tressler said…
Welcome. We're in Denver area as well. My daughter gets her treatments at Rocky Mountain Hospital for Children at Presbyterian St. Luke's. her doctor is Mindy Banks. We're here today receiving her Soliris treatment. Sorry to hear you all are going though this, it is very difficult and scary.
At 2:29pm on May 16, 2013, Linda Burke said…

It’s good to know that Piper’s mother is an RN, and it must be so difficult for her to wear the two hats of an aHUS parent and a medical professional. You mentioned treatment at the Children’s Hospital in Denver, and free to call Dr. Lum and Dr. Ford’s attention to our Home Page sidebar for a  'Doc to Doc Directory',  where physicians can connect with other doctors experienced in treating aHUS patients (its free, aHUS docs worldwide volunteer their help to colleagues).  Printing out that directory for as an option for professional medical consults might expand professional connections with aHUS expertise for your grandaughter’s care team.  In the event Piper’s doctors have mentioned specialized genetic screening for aHUS, we’ve posted the links to the University of Iowa’s MORL facility in the Home Page ‘Links Box’.  Our Foundation supports research efforts there, and Dr. Carla Nester and Dr. Pat Brophy volunteer in our Doc to Doc Directory (Dr. Brophy is also a member of this site, as well).

      Since aHUS is a complex topic to discuss with family and friends, we have informational materials about atypical HUS online at http://atypicalhus.ning.com/page/ahus-brochure-3 with a 1 page flyer helpful for extended family, nursing staff, and friends. This summary of educational materials includes a detailed overview of this rare disease, our 'aHUS Bootcamp' which should prove helpful in understanding the medical terms (also online at http://atypicalhus.ning.com/page/a-parents-perspective-ahus).  The aHUS Clinical Channel has video presentations that will inform on a variety of aHUS issues, too.

If her care team has mentioned  the IV drug Soliris aka eculizumab (the only FDA approved treatment for aHUS), this site has Soliris information available at http://atypicalhus.ning.com/forum/topics/soliris-1 but Piper’s mother should definitely call 1-888-SOLIRIS for further information.  Nothing can replace the info and medical advice offered by a patients’ own doctor/specialist/care team, so we strongly caution you that other patient’s experience may not be the proper medical treatment plan for your family’s situation.  (Seek and ask questions regarding medical advice from your own doctors or care team members.) 

Atypical HUS is a complex disease with a variety of manifestations, so perhaps you might also benefit from reviewing how aHUS can affect multiple organs in the body and not just the kidneys. (See http://atypicalhus.ning.com/forum/topics/ahus-complications-potential-impact-for-multiple-organs). I hope these resources provide a starting point  for aHUS, and that our website is a source of support for you and your family. Feel free to post and to ask questions as you wish/need.

 

 
 
 

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

Badge

Loading…

© 2017   Created by Deborah Lewis.   Powered by

Badges  |  Report an Issue  |  Terms of Service