The Foundation for Children with Atypical HUS

As my last blog stated my luck could be changing well... that isn't true anymore. What seemed like things were moving onward are now back to square 1. I interviewed for that job, didn't get it. I called the other veterinary clinic I interviewed at and was told that I would be considered for part time, instead of full time (which is partially good news). And lastly, the kidney front is now back to square 1, because my donor is now not a candidate to donate a kidney. So, I had suffered at least a day or so of depression. But I am lucky to have a very good friend who cares very much about me and my family, as she is a very good friend of my family. She snapped me out of the depression phase and told me not to give up. Mind you, that felt good to me at that time, I wanted SO BAD to give up.

 

I am at my withsend now, because everyone I know is having goodluck, while I have to work extra hard to find a job, to hopefully get out on my own and be more independent. It's my turn soon, I HOPE. I just don't know when or where it could happen. But I am using my resources to hopefully get my story out there for my need for a kidney transplant.

Views: 36

Comment

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

Join The Foundation for Children with Atypical HUS

Comment by Jessica Olivia Frysz on December 13, 2011 at 11:39pm

Dana: I appreciate the prayers ALWAYS. And, I know that the Christmas season can be full of miracles, but the one miracle I would like to happen doesn't look like it's going to happen for me, until after the holidays or even into next year.

Comment by Dana M Simone on December 13, 2011 at 6:06pm

Jessica, remember that the Christmas season is a time of miracles....you are in my family's prayers.

Comment by Jessica Olivia Frysz on December 12, 2011 at 10:34pm

Yes Cheryl: St. Francis was my confirmation name. And, I appreciate that, thanks! I know for sure that St. Francis wouldn't want me to give up my dream of working with animals.

Comment by Cheryl Biermann on December 12, 2011 at 6:22pm

PS, He wouldn't want you to give up!

Comment by Cheryl Biermann on December 12, 2011 at 6:22pm

Isn't St. Francis your confirmation name???  I'll say a novena for you to this powerful, wonderful saint, with whom you share your passion for animals with.

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 "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 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.



Badge

Loading…

© 2012   Created by ALPHA MARKETING.   Powered by

Badges  |  Report an Issue  |  Terms of Service