CAROLINE'S ITP JOURNEY

Cleveland2021-3.jpgThis fall will mark 25 years since I began my journey with chronic illness. In 1996, five months after the birth of my second child I started to not feel well, with strange and vague symptoms and suffered from extreme fatigue. For three years I went from doctor to doctor and had numerous tests. I was told that I had MS and then I was told that there was nothing wrong with me and it was all in my head. In April of 2000, I attended a family wedding. That evening my husband noticed a rash all over my feet and lower legs. I also had some odd bruises. I went back to my doctor several days later and she had me go for blood work. It was 3 a.m. when I received the call that would change my life. The doctor on the other end of the line told me that I needed to go to the Cleveland Clinic emergency room immediately. I asked if it could wait until the morning since my husband was out of town and I had a six-year old 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.” I spent the next week in the hospital and was given the diagnosis of Immune Thrombocytopenia or ITP.

For three years I lived day in and day out with the roller coaster of ITP … massive doses of steroids, plasma infusions, numerous hospitalizations, weekly blood draws, and an unsuccessful splenectomy. All these treatments 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.

Then I found the Platelet Disorder Support Association or PDSA. Had I known about this wonderful organization earlier in my diagnosis, I might have made different decisions about managing my illness. Meeting PDSA founder Joan Young and hearing her story of recovery, along with all of the resources PDSA provides, gave me hope and eventually gave me back my health and my life. I’ve been involved with PDSA for 16 years now. In January 2009, I became the organization’s executive director. In January 2019, I was named President and CEO of PDSA, an organization that has meant so much to me and my family. 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 affects almost 10 times as many people as hemophilia, yet most people know nothing about it. This lack of public awareness leaves many ITP patients feeling isolated and alone and is the main reason why there is so little support for research on ITP and, therefore, the lack of advancement in treatment.

Since PDSA was founded, we have served 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. PDSA.org now boasts 70,000-80,000 monthly visitors from more than 130 countries. PDSA receives no federal funding. It never has. That is why the support of our individual and corporate donors, along with the efforts of our fundraisers and volunteers is crucial in helping PDSA to fulfill its mission.

In January 2015, PDSA moved the national headquarters from Rockville, MD to Cleveland, OH. I hope you will join me and the PDSA staff and support our wonderful organization in the Cleveland “Pump it up for Platelets” national walk/run and show the compassionate spirit and generosity of Northeast Ohioans and help us make a difference in the lives of people who struggle with ITP and other platelet disorders.

 

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PDSA is a 501 (c)3 organization.
Contributions are tax deductible to the extent of the law.
PDSA is eligible for corporate matching programs.
PDSA receives NO federal funding.