Started Aug 10, 2009
Cheryl Biermann commented on Jessica Olivia Frysz's blog post I am doing just fine :D
Dana M Simone commented on Jessica Olivia Frysz's blog post LONG awaited update
Cheryl Biermann commented on Jessica Olivia Frysz's blog post LONG awaited updateHi, 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.
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…
ContinuePosted on May 21, 2012 at 2:14pm — 2 Comments
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…
ContinuePosted on March 20, 2012 at 10:23am — 2 Comments
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…
ContinuePosted on January 18, 2012 at 1:00pm — 1 Comment
I would like to take the time to wish all of the Atypical HUS families a very Merry Christmas and a healthy happy new year! I hope that 2012 will be better for all who have been touched by this disease, including myself. I may not have a job yet and I certainly may not have a kidney just yet, but I am hoping that 2012 will be bringing me better things to look forward to. One thing that will HOPEFULLY be occurring is a potential trip to California to attend a renal teen prom sponsored by the…
ContinuePosted on December 25, 2011 at 1:47pm — 4 Comments
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…
ContinuePosted on December 12, 2011 at 4:04pm — 5 Comments
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!
Wendy Flinn said… Happy Holidays Jessica!
Cheryl Biermann said…
Cheryl Biermann said…
Cheryl Biermann said…
Cheryl Biermann said…
Jodi Kayler said… 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.
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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.
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.

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