The Atypical HUS Foundation

Judy Trynosky
  • Female
  • Boulder, CO
  • United States
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  • Jennifer Smidt
 

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Latest Activity

Madeleine Lekas commented on Judy Trynosky's blog post No Title
"Hello Judy, I'm sorry I did not respond sooner.  My daughter, Izzy, is currently taking Nortriptolin at night, and her headaches have subsided.  However, she keeps getting viral infections even though she takes a prophylatic dose of…"
Sep 11, 2016
Judy Trynosky posted a blog post

Mimi - per headaches.... I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (…

Mimi - per headaches....I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (I take cipro for pseudomonas).  When I first started with the headaches, I took Tramdol before my IV.  After awhile, decreased to the point I no longer need it (about 6 months total).  Do keep in mind, I am 60, so may not apply in your case.  I only had the headaches the day /evening after my…See More
Jul 18, 2016
Cheryl Biermann left a comment for Judy Trynosky
"Hi, No, will not be going to Denver, Judy.  It is my son, Nathan with aHUS.  Sixteen now, diagnosed at 11 months, transplant with Soliris at age 11.  No rejections so far!  Hope the Denver meeting is good!  "
Jul 4, 2016
Jennifer Smidt left a comment for Judy Trynosky
"Hi, I will be attending the Denver Conference. I too will look forward to talking with an adult who has this as well. I hope you're doing well. Jenny"
Jul 3, 2016
Judy Trynosky and Jennifer Smidt are now friends
Jul 3, 2016
Walter Lee Powell left a comment for Judy Trynosky
"No, not going to make it to Denver."
Jul 3, 2016
Judy Trynosky left a comment for Cheryl Biermann
"Cheryl, sorry about calling you Lisa, but same message applies!  I cut/pasted this comment.  Still hoping to see you in Denver. Judy Trynosky"
Jul 3, 2016
Judy Trynosky left a comment for Cheryl Biermann
"Lisa, I can't tell where you live, but are you planning to come to Denver?  There are so very few adult patients, I would love to meet you and any other adult pts.  Please let me know.  Judy Trynosky"
Jul 3, 2016
Judy Trynosky left a comment for Lisa
"Lisa, I can't tell where you live, but are you planning to come to Denver?  There are so very few adult patients, I would love to meet you and any other adult pts.  Please let me know.  Judy Trynosky"
Jul 3, 2016
Judy Trynosky left a comment for Jennifer Smidt
"Jenny, are you coming to the Denver meeting?  I would be so nice to meet an adult with sHUS.  Judy T."
Jul 3, 2016
Judy Trynosky left a comment for Walter Lee Powell
"Walter, are you coming to Denver?  Judy Trynosky"
Jul 3, 2016
Judy Trynosky is attending Linda Burke's event
Thumbnail

Denver Meeting, July 2016 at Embassy Suites by Hilton Denver International Airport - 7001 Yampa Street, Denver, CO 80249

July 22, 2016 at 12pm to July 24, 2016 at 12pm
Meet Us in DenverJuly 22 - 24REGISTRATION NOW OPEN !https://www.eventbrite.com/e/the-atypical-hus-foundation-family-conference-denver-tickets-21588805699Registration Deadline: May 10, 2016 (Online at…See More
Jul 3, 2016
Linda Burke left a comment for Judy Trynosky
"Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list.  You may want to review the aHUS Bootcamp as a starting point, to get an overview of aHUS or to share with family…"
Jun 25, 2016
Judy Trynosky is now a member of The Atypical HUS Foundation
Jun 25, 2016

Profile Information

Birthday
April 17
I am an adult aHUS patient.
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
My child ( or myself as a patient) is best described as:
Not Tested

Judy Trynosky's Blog

Mimi - per headaches.... I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (…

Mimi - per headaches....

I've been diagnosed since Feb 2015, and too had headaches for the first 6 months of treatment after I got my infusion.  I also take daily antibiotics for chronic infections (I take cipro for pseudomonas).  When I first started with the headaches, I took Tramdol before my IV.  After awhile, decreased to the point I no longer need it (about 6 months total).  Do keep in mind, I am 60, so may not apply in your case.  I only had the headaches the day /evening after…

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Posted on July 18, 2016 at 8:40pm — 1 Comment

Comment Wall (4 comments)

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At 11:19am on July 4, 2016, Cheryl Biermann said…

Hi, No, will not be going to Denver, Judy.  It is my son, Nathan with aHUS.  Sixteen now, diagnosed at 11 months, transplant with Soliris at age 11.  No rejections so far!  Hope the Denver meeting is good!  

At 10:06pm on July 3, 2016, Jennifer Smidt said…
Hi, I will be attending the Denver Conference. I too will look forward to talking with an adult who has this as well. I hope you're doing well. Jenny
At 9:55pm on July 3, 2016, Walter Lee Powell said…
No, not going to make it to Denver.
At 10:18pm on June 25, 2016, Linda Burke said…

Welcome, we hope you find this site to be a source of information and support.  Please check out our aHUS resource list.  You may want to review the aHUS Bootcamp as a starting point, to get an overview of aHUS or to share with family and friends..

We look forward to your participation on this site.

 
 
 

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

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