It’s been 20 years since Caroline began her journey with chronic illness. In 1996, five months after the birth of her second child, she started to not feel well with strange and vague symptoms and began suffering from extreme fatigue. For three years Caroline went from doctor to doctor and had numerous tests. She was told that she had MS and then was told that there was nothing wrong and it was all in her head. In April of 2000, Caroline attended a family wedding. That evening her husband noticed a rash all over her feet and lower legs. She also had some odd bruises. She went back to the doctor several days later and the doctor sent Caroline for blood work. It was 3 a.m. when she received the call that would change her life. The doctor on the other end of the line told her that she needed to go to the ER immediately. Caroline asked if it could wait until the morning since her husband was out of town and she had a six and three year old sleeping in their bedrooms. He said no, it could not wait until the morning. And then he added, “don’t brush your teeth, don’t shave your legs, don’t bump yourself, you could bleed to death.” She spent the next week in the hospital and was given the diagnosis of Immune Thrombocytopenia or ITP. Caroline describes what happened next:
“For three years I lived day in and day out with the roller coaster of ITP … massive doses of steroids, numerous hospitalizations, weekly blood draws, and an unsuccessful splenectomy, which left me feeling even more fatigued and ill, while doing little to raise my platelet count. Not to mention the anxiety of knowing I could go to bed at night and not wake up due to a brain bleed.”
She continues, “Then I found the Platelet Disorder Support Association or PDSA. I’ve been involved with PDSA for 15 years and for the past nine years served as the organization’s executive director. For many ITP patients and their families this disease has a huge impact on a person’s quality of life and is a roller coaster ride of emotions including feeling of helplessness, anxiety, fear, and depression. ITP is the most common acquired bleeding disorder in the world, yet most people know nothing about it. PDSA has been able to fill that void, serving as a beacon of hope for tens of thousands of individuals and families in over 130 countries through information referral, patient support, education, research and advocacy.”
Plasma treatments can be a life-saving treatment for patients with ITP, the quickest way to raise the platelet count when platelet numbers are at a critically low level or to get a patient through surgery. This is an important fact for not only ITP patients, but for their family and friends who want to support their loved one in some way.