Evansville Man with Rare Blood Deficiency Overcomes Disease, Urges Others to Follow Dreams
By: Valerie Lyons, 44News
February 28 may be the last day of the year's shortest month, but it's also known as Rare Disease Day.
It's a day to raise awareness, support and change for individuals living with rare illnesses, their families and medical professionals and caretakers.
Statistics show more than 300 million people worldwide are living with a rare disease –- one that affects fewer than 200,000 Americans at any given time.
Zachary Crabtree is one of those people.
"The way I like to think of it is as long as I get my medicines whenever I should, then I would be able to be like any other kid," Crabtree said, referencing his younger self.
The Evansville native did manage to be like any other kid, but that childhood didn't come without its challenges. Crabtree was diagnosed with severe Hemophilia A when he was an infant -- a hereditary bleeding disorder that prevents blood from clotting.
"I have had episodes of what we call bleeds which typically happened in my joints or muscles, mostly my ankles where they would swell up really badly for a few days," he said. "I have a stronger tendency to bleed I guess."
His older brother also has the disease but it's still one so rare less than 30,000 people live with it in the U.S. Thankfully, however with such an early diagnosis, Crabtree started treatments right away.
That meant three IV infusions a week and an annual trip to the Indiana Hemophilia & Thrombosis Center (IHTC) in Indianapolis where he received intensive care from doctors specializing in his condition.
The center treats and supports patients throughout the state who are diagnosed with rare bleeding and blood disorders such as Hemophilia, Sickle Cell Disease, PAI-1, Hereditary Hemorrhagic Telangiectasia (HHT), Thalassemia and other diseases.
"It's really multidisciplinary care," said pediatric hematologist Angeli Rampersad. "It kind of encompasses all the spheres of their life that we can think of."
Dr. Rampersad is one of those specialists who has treated Crabtree throughout his life. She said because specialists for rare diseases are so important, IHTC has several clinics throughout the state — including one in Evansville.
She and her team would sometimes make the trip down to treat patients with blood disorders at the pediatrics clinic held at the Ascension Center for Children. There is also an adult clinic at St. Vincent Hospital.
Rampersad said while clinical visits are necessary for treating the diseases, it is the center's summer camp, Camp Brave Eagle that provides resources even more vital in overcoming the challenges.
"We got trained on how to give ourselves the medicine," Crabtree said. "So, by the age of 7, I was already giving myself IV medicines three times a week."
It was there where Crabtree, and others like him, received a treatment better than medicine.
"In the end, everybody is going home with everybody's contact numbers and now you have this wonderful network of children throughout the state of Indiana who met at camp," Rampersad said.
At camp, Crabtree and his friends would talk about becoming doctors one day and work to find a cure for Hemophilia, but when Crabtree was 13 he was life-flighted up to Indianapolis due to a brain bleed, which was later determined to be caused by a tumor.
He spent several weeks recovering at the hospital. It was a difficult time, he said, but an experience that made him realize he would make that dream of being a doctor become reality.
"Just the care that I got," Crabtree said. "That's whenever I kind of changed from wanting to do research to wanting to care for people who are going through something like that."
Now, Crabtree is about to graduate from the Marian University College of Osteopathic Medicine and start his residency this summer. He hopes to eventually become a family practitioner with the goal of one day treating those with bleeding disorders.
"A young man who grew up with these experiences now joining the medical field?" Rampersad said. "It feels so rewarding."
Crabtree hopes his story can inspire others, and ultimately send a message to others suffering from a rare disease, that no matter your circumstance anything is possible.
"It can be hard at times," Crabtree said. "But just fight through the obstacles, stay positive and just follow your dreams."