Prayer, laughter, the answer
Published: March 23, 2006 | 3832nd good news item since 2003
Reidsville native Karen Tickle Tillman, who now makes her home in Greensboro, is beating the odds in her struggle against a rare disease, Hermansky-Pudlak Syndrome.
Tillman said most people diagnosed with the disease do not survive past their late 40’s or early 50’s, but at 41, she is optimistic. “I’ve always been a fighter,” asserted Tillman.
What is HPS?
HPS is a rare genetic disorder that was discovered by two Czechoslovakian physicians in 1959. The disease causes albinism, vision impairment and a tendency to bleed.
Tillman said only 800 people worldwide have been diagnosed with the disease, three of which have roots in Rockingham County (Tillman, Tillman’s cousin and an anonymous HPS patient).
Because of the rareness of Tillman’s illness, she was misdiagnosed for years.
Tillman was born an albino; she had white hair, pale skin, pinkish eyes and was sensitive to light.
At the age of 9 years old, Tillman was diagnosed with Granulomatous Colitis, which is now known as Crohn’s Disease.
Tillman said she was in and out of hospitals between the ages of 9 and 13 because of her bad bleeding episodes. Tillman explained HPS patients lack dense bodies in their blood platelets, so their blood does not clot properly. At the age of 13, Tillman had her colon and small intestine removed and received an ileostomy, or pouch, in their place.
After suffering from a mysterious illness for 38 years, Tillman discovered the true source of her medical problems in 2002. She received a phone call from a relative named Kathy McIntyre sharing that her son Matt had been diagnosed with HPS. Tillman observed her symptoms were similar to those of her cousin Matt’s and began doing research on the disease. After reviewing information from Donna Appell, the founder of the HPS network, and talking with her dermatologist about being tested, Tillman sent her blood to an HPS testing center at the University of Minnesota. The results were both discouraging and relieving. Tillman was upset about having a rare degenerative disease, but at the same time relieved to be able to put a name to her disease.
Thanks to Tillman’s strong support system of family and friends, she keeps a positive attitude. Tillman said having HPS make her “step back and examine the most important things in my life, which are my relationship with God, and the relationship with my family and friends.”
Tillman and her close friend Jacline Carter, of Reidsville, share a special relationship.
“Karen has a great disposition and is upbeat and positive,” said Carter. “There’s not much that keeps her down.” She added Tillman helps her “find the humor in everyday life and put things into perspective.”
Tillman said Carter, who she affectionately calls “Jackie,” transports her to and from places, provides emotional support and a listening ear, and “feels my pain more than others do.” She said Carter even accompanied her to an HPS network conference in February, where she gave a speech to HPS patients about stress relief.
Another one of Tillman’s supporters is her husband Tommy. “He is an all around good soul,” said Tillman. “He has taken me to the emergency room, sat by my bedside and worked two jobs at a time to buy my medicine and keep food on the table.”
Tillman also has a good relationship with her daughter Holly, who is now 17. She said one of the hardest parts of giving HPS was telling her daughter she had a terminal illness. Tillman said Holly had coped well with her mother’s disease and even understood when she missed birthday parties and other special events. “She’s a wonderful daughter,” said Tillman.
Living with HPS is not an easy task. Tillman faces numerous challenges on a daily basis. Because she is legally blind, she cannot drive a car. Tillman must rely on others to transport her to HPS conferences. Another complication of her disease is pulmonary fibrosis, which causes fatigue, shortness of breath and scarring of the lungs. Tillman said she often does not have the energy to clean her house and has to be careful about using cleaning products because of her pulmonary fibrosis. The sheer number of medications Tillman takes is daunting. She said she takes pain medications on a regular basis in addition to two types of inhalers and medication to treat her inflammatory bowel disease.
Tillman said she believes laughter is the best medicine. She points out that anyone dealing with life and death on a daily basis must have a great sense of humor to keep a positive attitude. She has developed an ulcer around her ileostomy opening called Pyoderma Gangrenosum. Rather than feeling sorry for herself when she found out about her latest problem, Tillman jokingly commented, “Seems I have a habit of collecting long named and rare diseases!”
“Prayer and laughter is the answer,” said Tillman. “The fact that I have laughed and prayed and people have prayed for me is the reason I’m not any sicker than I am today.”
Tillman’s faith in God also helps her cope with her disease. “God is good and he will take care of everything,” said Tillman. “With God, there is hope for tomorrow.” Tillman is an active member of Westover Church in Greensboro and volunteers in the church’s Mothers of Preschoolers program. She said, “The program has helped me a lot because I’m thinking about these kids and teaching them about God.”
The HPS Network
Tillman is dedicated to HPS research and informing others about her disease. She participates in an ongoing study of HPS at the National Institutes of Health in Bethesda, Md. and is the Regional Mid-Atlantic Coordinator for the HPS Network. She has also educated a group of dermatologists at the University of Chapel Hill and Duke about the disease.
Tillman serves as inspiration to other HPS patients. “There are days when I want to chuck the whole thing,” admitted Tillman. “But if I give up, others give up.” She said the worst part of having HPS is “getting close to people [through the HPS Network] and then seeing them die.” Despite the pain of watching them die, Tillman would not give up her friends at the HPS Network for anything. She already has a close relationship with Heather Kirkwood, an HPS patient from Kansas, and is looking forward to spending time with Dakota Pruett, a nine-year-old HPS patient from Roanoke, at the Human Race walk/run in Greensboro this Saturday.
Tillman’s goal in the 5K walk/run is to raise $3,000 for the HPS Network.