The Atypical HUS Foundation

Jessica Olivia Frysz
  • Female
  • Buffalo, NY
  • United States
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Jessica Olivia Frysz's Friends

  • TAMARA FERNANDEZ MEGIAS
  • Sharon Walker
  • Jonathan Aguallo
  • Wendy Flinn
  • Alyssa Deffenbaugh
  • Jill Ziegler
  • NATALIE WALLACE
  • Zofia
  • Cassie
  • Grace
  • Mary O'Shea
  • lisa ann peterson
  • Jodi Kayler
  • Amy Swarbrick
  • Colette Ann Frysz

Jessica Olivia Frysz's Discussions

 

Jessica Olivia Frysz's Page

Latest Activity

Jessica Olivia Frysz commented on Jessica Olivia Frysz's blog post 9months and counting! (no kidney folks), but my job!
"Grace: I hope that for both of our sakes, we both receive a transplant in 2013; people keep on stating it's your year Jess, it's your year- that year passes and all of a sudden I'm stuck in the same position.   Cheryl: I will be…"
Dec 5, 2012
Grace commented on Jessica Olivia Frysz's blog post 9months and counting! (no kidney folks), but my job!
"congratulations! I know what a relief every work milestone is!  I hope 2013 is your lucky year for a kidney! (and for me, too)"
Dec 5, 2012
Cheryl Biermann commented on Jessica Olivia Frysz's blog post 9months and counting! (no kidney folks), but my job!
"Such a nice update, Jessica.  Merry Christmas to you also, and please tell your mom and family we hope they have a wonderful Christmas season also."
Dec 5, 2012
Jessica Olivia Frysz posted a blog post

9months and counting! (no kidney folks), but my job!

Sorry everyone that I haven't been on here in a LONG time, I have been quite busy lately.  Since the last time I posted; I'm sure you folks read that I had started an LVT job. Well, I am STILL working at it- 9 months now and I am enjoying it, but it is very hectic. I have begun doing surgical assisting, which is pretty interesting. No news on a kidney just yet, but I am holding up my head high in hopes that something will certainly come sooner than later. Happy Holidays to all!  See More
Dec 4, 2012
Jessica Olivia Frysz commented on Ivette Rios's blog post I WISH . . .
"Yes, you will be mad, you will feel depressed at times, but you know what helps me with that??? I write in a journal to let out my anger. No, we didn't choose to get sick, trust me if I had a choice I would've made a trade with someone a…"
Dec 4, 2012
Jessica Olivia Frysz commented on Ivette Rios's blog post I WISH . . .
"Ivette: who says you can't work, while having aHUS???? I didn't choose to get sick at the age of 11 mos with this condition either, I didn't  choose to go onto dialysis immediately after having my kidneys removed at the age of 1.…"
Dec 4, 2012
Jessica Olivia Frysz replied to Linda Burke's discussion ADULTS with aHUS
"This is a great thing to have I think :) Life as an adult aHUS patient, especially one who has been living with aHUS their entire life, can be challenging. I myself face the many rigors of workplace challenges due to not just my size, but my…"
Dec 4, 2012
Linda Burke left a comment for Jessica Olivia Frysz
"Hi Jessica, Thanks to Jennifer Christopher's interest in connecting with other adult aHUS patients, I've created a new forum for this website - a featured Forum that will keep the issues of adult aHUS patients at the front and…"
Dec 4, 2012
Cheryl Biermann commented on Jessica Olivia Frysz's blog post It's been quite a while; busy, busy, busy!
"Great to hear from you, Jessica.  I bet you are the most compassionate care giver because of your experience.  I've heard of markers before, just heard though, I don't have a clue, sorry.  I'll try and get some info for…"
Aug 2, 2012
Jessica Olivia Frysz posted a blog post

It's been quite a while; busy, busy, busy!

I know that many of you are curious to find out how I have been doing with my new job and if I am enjoying it? Well, I am doing splendid! I am working like crazy now, and I am slowly regaining my confidence back when I am performing certain tasks at work; such as blood draws, because just like humans dogs and cats don't like to be poked more than once, but sometimes it just happens that way :( When I am performing certain tasks, I try to think of myself in that animal's situation, do I want…See More
Jul 25, 2012
Jessica Olivia Frysz commented on Jessica Olivia Frysz's blog post I am doing just fine :D
"hahaha Cheryl: The guy thing has never come easy for me. They either get scared and run away from my medical condition or they cling onto me for dear life until I want to strangle them! The one I was going out with was one of those people who likes…"
May 25, 2012
Cheryl Biermann commented on Jessica Olivia Frysz's blog post I am doing just fine :D
"I am so happy you found your hearts desire in working with animals!  They can only benefit from your passion, and I too am short, I know animals could care less about your size, (except of you're overly large and try to ride them or…"
May 24, 2012
Jessica Olivia Frysz posted a blog post

I am doing just fine :D

Hello to all the aHUS families out there!I know it's been a LONG time since I have been on here, but I have been very, VERY busy. I was hired as a Veterinary Technician at a veterinary clinic in Amherst NY on March 17th :) I am doing well, still getting the hang of things, and I am improving with each passing day.  I have become a part of the veterinary team, very quickly, despite my medical situation and my height; they don't judge me in that way. They have been willing to train me on the job…See More
May 21, 2012
Dana M Simone commented on Jessica Olivia Frysz's blog post LONG awaited update
"Jessica, Congratulations on your new job! I'm glad you enjoyed your time in our central MA town of Rutland:)"
Apr 7, 2012
Cheryl Biermann commented on Jessica Olivia Frysz's blog post LONG awaited update
"One word, YAY!"
Mar 21, 2012
Jessica Olivia Frysz updated their profile
Mar 20, 2012

Profile Information

Birthday
February 23
Do you have a friend or family member diagnosed with aHUS?
No
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.
currently an aHUS patient.
My child ( or myself as a patient) is best described as:
Factor H (CFH) /Protein (Gene)

About me

Hi, I'm Jessica, to my friends I'm known as Jessie, shorty or shortfry. I am the daughter of Colette Frysz and Robert Frysz, little sister of Angelina Richards, sister in law to Ryan Richards. I was born on February 23, 1988, seems like a very good start and ending to my story doesn't it? But, it has a dark secret and it is aHUS. In the year 1989 I was diagnosed with aHUS, at the age of 11 months to a year old, I was tiny, fragile and unable to comprehend what was happening to me. My mom had a tough decision to make, to have me suffer an extremely painful stroke from the very high blood pressures I was suffering, or take my kidneys out, as tough as it was, she decided to take my kidneys out.From then on, I remained on dialysis. Throughout the 22  years I have been on dialysis, I have gone through nephrectomies, biopsies of a newly transplanted kidney, parathyroidectomies, perma catheter placements, PD cath placements, which was performed once, I got peritonitis and it shut down my first PD cath, they tried again when I was 4. but it was unsuccessful. Then, graft placements, up to now, I have a graft in my right thigh, that is maintained with 3 month angio procedures. I am running out of options, but somehow I am still alive. My life hasn't been a piece of cake at all, but somehow I keep on fighting strong; I currently work as a dog daycare attendant at a dog daycare AND have officially landed a Licensed Veterinary Technician job, one I have been waiting for. I work part-time at both places at the moment, until I am granted other options.  I drive a car and try to live life as a normal 24 year old as possible. I don't date at the moment, but am always willing to give it a try when someone is willing to accept my condition as well as me for me.
Even though I have had over 20-30 surgeries or so in my lifetime, I don't let it stop me, and I believe that with the help of my church, I have the spirit to go on. I am an altar server in my church, every sunday. With the help of the people that have been behind me every step of the way, I am here, I am fighting, I am strong. And, I hope to inspire most of the members on this website, that even though aHUS is a silent killer at times, we can prevent it, if we keep on teaching ourselves about the signs of this disease and what can be done to prevent it, and what can be done to treat it, if it gets worse. From my studies at school, I have learned that you need to open your horizons when you are looking for an answer on a specific issue.
I just hope that I am still alive when there is a cure for this disease, because I will be one of the ones to be supporting it.
I think that one of the reasons I am going to school for a medical field, is because I have been around the field since I could remember. I know it gets to be much when a patient needs to go on dialysis, it's tough, it truly is, especially for the patient.
We will keep on fighting this thing until a cure is in sight, I can't promise that, but I know it will happen.

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Jessica Olivia Frysz's Blog

9months and counting! (no kidney folks), but my job!

Sorry everyone that I haven't been on here in a LONG time, I have been quite busy lately.  Since the last time I posted; I'm sure you folks read that I had started an LVT job. Well, I am STILL working at it- 9 months now and I am enjoying it, but it is very hectic. I have begun doing surgical assisting, which is pretty interesting.

 

No news on a kidney just yet, but I am holding up my head high in hopes that something will certainly come sooner than…

Continue

Posted on December 4, 2012 at 9:41pm — 3 Comments

It's been quite a while; busy, busy, busy!

I know that many of you are curious to find out how I have been doing with my new job and if I am enjoying it? Well, I am doing splendid! I am working like crazy now, and I am slowly regaining my confidence back when I am performing certain tasks at work; such as blood draws, because just like humans dogs and cats don't like to be poked more than once, but sometimes it just happens that way :( When I am performing certain tasks, I try to think of myself in that animal's situation, do I want…

Continue

Posted on July 25, 2012 at 9:57am — 1 Comment

I am doing just fine :D

Hello to all the aHUS families out there!

I know it's been a LONG time since I have been on here, but I have been very, VERY busy. I was hired as a Veterinary Technician at a veterinary clinic in Amherst NY on March 17th :) I am doing well, still getting the hang of things, and I am improving with each passing day.  I have become a part of the veterinary team, very quickly, despite my medical situation and my height; they don't judge me in that way. They have been willing to train me…

Continue

Posted on May 21, 2012 at 2:14pm — 2 Comments

LONG awaited update

The last time I posted, I stated that I went to California for a few days. Well, hahaha I went on yet ANOTHER trip on March 4-9 to Rutland Massachusetts. Oh my gosh, this place was so beautiful! I stayed at a farm called Overlook Farm which helps the Heifer project. Heifer, for those who don't know is an organization that raises animals to be donated to families who are in need in other countries even here in the United States. These animals help the families produce materials that can help…

Continue

Posted on March 20, 2012 at 10:23am — 2 Comments

Trip to California-complete success!

 

Sorry everybody for not posting for a while. I was very busy with work and getting ready for a trip, which I took this past weekend to California. The trip I took was to go to an event sponsored  by the Renal Support Network (RSN) called the Renal Teen Prom. Yes, I know I'm not a teen anymore, but this event is for patients 14-24 years old. This event is like no prom you or I have ever attended at our high schools. This prom is a big party!!! Hundreds and I mean HUNDREDS of kidney…

Continue

Posted on January 18, 2012 at 1:00pm — 1 Comment

Comment Wall (13 comments)

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At 9:32am on December 4, 2012, Linda Burke said…

Hi Jessica,

Thanks to Jennifer Christopher's interest in connecting with other adult aHUS patients, I've created a new forum for this website - a featured Forum that will keep the issues of adult aHUS patients at the front and center!  So that others may more easily share infomation, I'd appreciate it if you'd consider adding (or transferring) your comments onto this more visible spot.  I've invited others with the message below:

'Our thanks to Jennifer Christopher for starting this important aspect of outreach and discussion among aHUS adults!  Her insight has highlighted a need for a dedicated 'Forum for Adult aHUS Patients', so please visit our newly featured forum for adult aHUS patients to share their journey and to post concerns and questions.

Join the conversation at http://atypicalhus.ning.com/forum/topics/adults-with-ahus .'

At 4:11pm on July 21, 2011, TAMARA FERNANDEZ MEGIAS said…

Thanks for your comment and I hope that soon you find that job you love so much ..

I'm glad to meet you, and hope we can be friends. Greetings!

At 9:36am on December 16, 2010, Wendy Flinn said…

Happy Holidays Jessica!

At 8:28pm on February 24, 2010, Grace said…
Happy birthday yesterday! I hope it was great and you got lots of love from all your friends, human and furry ones (and scaly?).
At 10:05am on January 27, 2010, Cheryl Biermann said…
Jessica that is SO exciting! Now we all sit and drum our fingers in impatience to see what follows...your poor mamma!
At 10:13am on January 4, 2010, Cheryl Biermann said…
Oh, Jessica, you have no idea how fortunate we are to have come to Cardinal Glennon Medical Center when he got sick, even the nurses in the ER knew what he had...We had already made friendships when we had our horrible car accident in 96, so they also knew us all in the PICU. I have always been able to sleep in the PICU, or anywhere else with him, on TCU when then had to put in a line without giving him knock out stuff, they allowed me to help hold him, and distract him, same thing when they tried putting in a pic line, (He's always had to go to the OR for any kind of line because his veins, well you know). They are fantastic here about keeping parents and kids together, I used to get to go back to the OR before surgery until some of the moms upset the kids too much then they did stop that. So yes, I'll be right there when he gets a look at that needle-it ought to be very interesting!
At 1:09am on January 3, 2010, Cheryl Biermann said…
Thanks for the heads up, at least he's been somewhat used to the needles with his ports...but I know I've heard the fistula ones are real dooseys!
At 10:34pm on January 2, 2010, Cheryl Biermann said…
Hi Jessica! I hope you are feeling a little better now after the fistulagram, Nathan goes Jan. 7 to check out his veins for a fistula, I am so excited to get rid of the dialysis catheter, but he is a little scared...he remembers his last couple of surgeries...trying to help him get comfortable with the idea.
At 7:59pm on January 2, 2010, Jodi Kayler said…
Thanks for the message. I'm so excited to hear about the transplant progress. My family will be watching you and praying for you. Even though Coen's kidneys are OK for now, he will also need a transplant someday. You will be clearing the path for us as you try Soliris in conjunction with the new kidney. The good news about the Soliris is it is comparatively easy and pain free compared to pheresis and dyalisis. I think you'll see an amazing change in your life. We are animal people too. We have 2 boxers, 2 cats, 2 horses, and 2 red bellied toads. Animals are such an important part of our lives and really bring happiness even on bad days. I can see why you chose it as a future profession. And with your medical knowledge, you already have a head start in your training!
At 9:52pm on December 23, 2009, Grace said…
Congratulations on passing your classes! I hope you have a wonderful Christmas and a very happy and healthy new year!
 
 
 

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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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