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Meet Carly Bankovich

Carly and Linda Bankovich attended the 2015 National Patient Education Conference thanks to the generosity of our donors. Two years ago, 12-year-old Carly Bankovich was in the middle of her basketball game and knew something didn't feel right. She just didn't know what.

Carly Bankovich
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“My hands were not moving like they should have been,” remembers Carly.  “The skin on my arms was hard and my hands were really stiff.”

Unlike many scleroderma patients, Carly’s diagnosis was a quick one.  

“My primary doctor said that in his thirty years of practicing, he had never seen anything like this before,” said Carly. “So he immediately referred me to Children’s Hospital in Pittsburgh – specifically to Pediatric Scleroderma Clinic director Dr. Kathryn Torok.  Dr. Torok knew right away what I was dealing with.  I had never heard of scleroderma before.  I was so scared.”

Dr. Torok introduced the Bankovich Family to the Scleroderma Foundation where she knew they would be in good hands for additional support and information. “I’ve been blessed to have such a great doctor and the people at the Foundation,” Carly said.  “It must be so hard for someone who doesn’t have supportive people around them.” 

Dr. Torok has played a critical role in Carly’s care and Carly’s father, Joe, wanted to recognize her for her efforts.  His company, Penn Metal Stamping, organized monthly fundraisers and presented Dr. Torok with a check to support the Scleroderma Center and a commemorative plaque. 

Soon after her diagnosis, a fellow employee at Joe’s company mentioned that she had a granddaughter Carly’s age who had also recently been diagnosed with scleroderma. “We couldn’t believe what a small world it was for such a rare disease,” Carly’s mother Linda said.  “The girls got together soon after and were a great support to one another. One of the things they talked about was that Carly’s new ‘scleroderma friend’ was going to the 2015 National Patient Education Conference in Nashville, Tenn.,” Linda continued.  “Dr. Torok had talked about the conference to us just a few weeks before.”

“We were excited that there was a juvenile program at the upcoming Conference designed for families just like ours,” Linda mentioned.  “However, we were not in a position to attend given our mounting medical bills.  But Dr. Torok told us about the possibility of scholarships.  We applied and were so grateful that Carly received one.”  

“I was excited to attend the Conference,” beamed Carly.   “I met so many other kids just like me.  Just knowing that I wasn’t the only one in the world dealing with this was a relief.  The conference was educational and so informative.  After attending I was able to explain scleroderma so much better to my friends and teachers. I didn’t even know there were different kinds of scleroderma before that.  It was sad to see other patients dealing with worse symptoms than me but it made me appreciative of how far I’ve come since starting treatment.  I also couldn’t believe how many miles some patients had to travel to see special doctors. It really was an awesome experience.”

The Conference was also an eye-opening experience for Linda. 

“It was nice for Carly to see other children going through the same thing,” explained Linda.  “We met so many people who were incredibly supportive, friendly and welcoming.   We owe Dr. Torok and the Foundation a big thank you. “Our hope is that more families can experience the power of the conference and the support of others living with scleroderma.”

 

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