Eastland Students Host Cystinosis Awareness Week

Eastland student council member, Logan Feltmeyer (left), with her Aunt Paula Shal after the school wide assembly held on Friday, February 12, 2010. (Photo courtesy of MaryBeth Landherr)

The Eastland High School student council is hosting Cystinosis Awareness Week February 15th through19th in hopes of educating both adults and students about the rare but debilitating disease. Junior student council member Logan Feltmeyer’s aunt, Paula Shal, was diagnosed with the disease at the age of 17. Paula has gone through four kidney transplants with the most recent one occurring in October 2009.

Paula received her B.S. in Education from the University of Wisconsin-Madison and a Master’s in Adult Education from the University of Phoenix-Online. 

“I work full time as a Training Supervisor for American Girl, an independent subsidiary of Mattel.  I am also the VP-Education and Awareness for the Cystinosis Research Network, where my responsibilities include maintaining the website, editing newsletters, and coordinating attendance at medical meetings.”

Paula’s story began with a routine physical when she was ten years old.

“Doctors discovered that my creatinine was elevated, which indicated kidney failure. I received a kidney transplant from my mom in 1987 at the age of 17.

After the transplant, I was diagnosed with a rare genetic disorder called cystinosis. Cystinosis is characterized by an abnormal accumulation of the amino acid cysteine in the cells. Cysteine can destroy organs and muscles in the body, including the eyes, heart, kidney, pancreas, etc. It would explain why I had difficulty talking, swallowing, weakness in my hands, short stature, shortness of breath, sensitivity to sunlights, etc.”

In 1991, her mom’s kidney rejected. At the age of 20, Paula received another kidney transplant from her brother Brian. Brian’s kidney lasted 11 years before she experienced chronic rejection. In 2002, she received her husband, Jim’s kidney.

“Jim’s kidney did not function right away after the transplant. After a two week period of intense treatment that included anti-rejection meds and plasmapheresis, his kidney began to work! It worked great until Summer, 2008, when I started retaining water in my feet. My creatinine was fine, so my transplant coordinator put me on lasix.”

Later that summer, Paula contracted an infection from a hospital procedure. It was then she learned she was taking an anti-rejection drug that should have been discontinued.

“Even though I went to all my routine visits and blood tests, it was not noticed that I was still on this drug. I later learned this drug was causing my puffy feet.  Jim’s kidney began to fail rather quickly after the infection. I was admitted to the hospital in Jan., 2009 and given high doses of steroids to try to reverse the kidney damage.  It did not work and only made my blood sugars go up, which resulted in insulin dependency.”

Jim put out the word that she would need another transplant in the near future. 

“I was blessed to have several family members and friends get tested but none were good matches, and even worse, I had a high amount of antibodies built up against all of them.” 

In May 2009, Paula went on dialysis for the first time.  While she was on dialysis, a friend from work decided to be tested.  It turned out she was an 85% match, and better yet, Paula had no antibodies built up against her.  She unselfishly donated her kidney on Oct. 15, 2009. 

“This surgery went smooth for both of us.  I had become so run down on dialysis that I immediately felt better in the recovery room after receiving my friend’s kidney.  We were out of the hospital in record time, and we have both been feeling great ever since.”

Paula spoke to the entire student body about the disease. She explained that there are only 500 cases in the United States which makes it very hard to get funding for research. That is why, as a spokesperson for the Cystinosis Research Network, Paula was thrilled to hear that Eastland High School was going to try to raise money.

“I just wanted to spread the word about Cystinosis, and it’s great that the whole school is willing to help,” commented Logan after the school assembly on Friday, Feb. 12.

Activities during the week include: a hat day on Wednesday where students will have to donate $1 and will be allowed to wear a hat all day; a taco supper Thursday, February 18th from 5:00-7:00 before the Eastland vs. West Carroll boys basketball game; a raffle for 2 American Girl Dolls and a 5 in 1 basketball hoop—tickets available in the high school office or at any home basketball game this week.

Finally, all week students will “vote” for the varsity boys’ basketball player they want to see get a pie in the face by placing money in a bucket with the player’s picture on it. All proceeds will be donated to the Cystinosis Research Network.

Anything donated by the Eastland community in this fund raiser will be matched by American Girl/Mattel, Paula Shal’s employer. For more information or to give a donation, contact Eastland High School at 439-6341.“I was blessed to have several family members and friends get tested but none were good matches, and even worse, I had a high amount of antibodies built up against all of them.” 

In May 2009, Paula went on dialysis for the first time.  While she was on dialysis, a friend from work decided to be tested.  It turned out she was an 85% match, and better yet, Paula had no antibodies built up against her.  She unselfishly donated her kidney on Oct. 15, 2009. 

“This surgery went smooth for both of us.  I had become so run down on dialysis that I immediately felt better in the recovery room after receiving my friend’s kidney.  We were out of the hospital in record time, and we have both been feeling great ever since.”

Paula spoke to the entire student body about the disease. She explained that there are only 500 cases in the United States which makes it very hard to get funding for research. That is why, as a spokesperson for the Cystinosis Research Network, Paula was thrilled to hear that Eastland High School was going to try to raise money.

“I just wanted to spread the word about Cystinosis, and it’s great that the whole school is willing to help,” commented Logan after the school assembly on Friday, Feb. 12.

Activities during the week include: a hat day on Wednesday where students will have to donate $1 and will be allowed to wear a hat all day; a taco supper Thursday, February 18th from 5:00-7:00 before the Eastland vs. West Carroll boys basketball game; a raffle for 2 American Girl Dolls and a 5 in 1 basketball hoop—tickets available in the high school office or at any home basketball game this week.

Finally, all week students will “vote” for the varsity boys’ basketball player they want to see get a pie in the face by placing money in a bucket with the player’s picture on it. All proceeds will be donated to the Cystinosis Research Network.

Anything donated by the Eastland community in this fund raiser will be matched by American Girl/Mattel, Paula Shal’s employer. For more information or to give a donation, contact Eastland High School at 439-6341.