With her platelets at times falling below 10,000 (a normal platelet count is 150,000 to 400,000), Caroline became immersed in the world of ITP, experiencing issues commonly associated with the disease, including extreme fatigue, side effects of treatment and the crushing worry that she might suffer a serious bleed. “You live by that platelet count. Early on, I sometimes I went three times a week for a CBC [complete blood count] test to find out my platelet count. Then I would wait by the phone for the doctor to call,” she recalls.
Because ITP is a rare condition, Caroline naturally felt alone in battling the disease. Yet, at her sickest point, she found hope where she least expected it. Her secret? Reaching out to others with ITP. In doing so, not only did Caroline find a community of support; she also landed the role of a lifetime as executive director of the Platelet Disorder Support Association (PDSA). Today, Caroline shares why it's so important to make those ITP connections.
Caroline felt the first stirrings of optimism after attending an annual PDSA meeting and hearing how other people were living full lives with ITP. “The meeting was so inspiring and informative. I kept thinking as I took all of these failed treatments that I was the only one. Then, I met Joan Young, founder and president of PDSA at the time. Her story gave me hope that I would recover from my ITP,” says Caroline, who tried corticosteroids, immunoglobulins, a splenectomy and finally dietary changes before going into remission. “It was such an uplifting experience meeting others with ITP that I became involved with PDSA.”
While her husband and parents were a cornerstone of support, especially during the times when she was hospitalized, Caroline says that talking with others who had ITP gave a critical boost to her emotional health. “Much as friends and family can be supportive of you, they can’t understand exactly what you are going through like another person with ITP. It’s important to hear other people’s stories. I learned that what I went through is typical, but I didn’t know that back then.” Caroline came home from the PDSA meeting and, at the urging of her hematologist at the Cleveland Clinic, partnered with another woman to form the nation’s first regional ITP support group.
That effort blossomed into 32 U.S. (plus one Canadian) ITP support groups through the PDSA, which also hosts online discussions and teleconference meetings. Caroline got a special thrill when her family became active in the ITP community. Several years ago, in support of her mother, Caroline’s seventh-grade daughter formed a Facebook group for children and young adults who have ITP. Today it is 8,000 members strong.
A true believer in the power of friendship, Caroline urges others to talk with someone else who has ITP and never give up. “New treatments are available. If something isn’t working, there might be something else out there for you. I tell people, ‘Look at me, I have been in remission now for nine years. There is always hope."