Project Scleroderma | Lisa’s Story
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Lisa’s Story

By: Christy McCaffrey

November 11, 2015

“I am Lisa Wilson – Paramedic, girlfriend, daughter, aunt, friend, and so much more. I am not a disease. I am a fighter, and we can all win this!!”

Lisa Wilson is a 36-year-old woman from Columbus, Ohio who was diagnosed with scleroderma in 2009. She spent the entire year prior to her diagnosis with a host of symptoms that she says, “like puzzle pieces, were hard to put together. But, once they were, I got my sanity back somewhat”.
At the time, Lisa was in her late twenties and an active young woman working two jobs, as a paramedic in the emergency room of Columbus’ Nationwide Children’s Hospital and as an instructor/preceptor for Columbus State Community College. She also started nursing school at the age of 28 after deciding that she would like to do more in medicine; however, she soon began to experience severe bouts of fatigue so bad that, on some days, she couldn’t get out of bed. Lisa says, “ I thought it was my work and school load, so I switched to the part-time nursing program. However, a host of other terrible symptoms soon followed, including severe heartburn, joint pain and Raynaud’s attacks in her hands and feet. During these spells, her hands and feet would get so cold that they would turn purple and then white. Then, they would painfully come back to life and regain normal color and feeling. Months into the progression of these symptoms, Lisa lost fifty pounds, quit nursing school and had to take a leave of absence from both jobs.

“Being a paramedic and in nursing school at the time I became ill may have saved me,” says Lisa. “I became my own advocate and had a great medical knowledge base so I set out to use it. I stood up to doctors who pushed me aside as crazy and so easily dismissed me saying I was a healthy 29-year-old who needed depression meds. I fired some of my doctors (yes you can do that); I did tons of research and kept/found the doctors I needed to get my answers.”

“In the fall of 2009,” Lisa continues, “my doctor called me and asked me to come in to see her. She had, after months of trying to help me and running every test in the world, got the results of an auto immune blood work panel I requested her to run. For some reason, I felt overjoyed when she sat me down to confirm I did have something wrong with me; she told me she was certain I had scleroderma.”

Although Lisa says she was briefly relieved and joyful that she had finally reached a diagnosis, she soon learned there was no lasting joy to be had in her diagnosis, as the type of scleroderma she had involved her internal organs. She says, “basically my inside connective tissues in areas have hardened and no one can say what will get better. But, they can tell you to count on it getting worse. I was so confused as to why me – a question I try not to ask myself because there is no answer. I was mad at the world for a while.”

Despite her struggle with accepting her diagnosis, Lisa went on to join her local Scleroderma Support Chapter and, three years in a row, hosted and chaired “Stepping Out to Cure Scleroderma” walks in her hometown, raising over $20,000 to help support this cause that is so incredibly personal to her. Unfortunately, this cause became even more personal to Lisa and her family this past year when her younger sister, at the age of 25, was also diagnosed with scleroderma. Lisa explains, “I prayed for months for them to find out why she was sick, but also prayed it was not scleroderma. Her diagnosis turned my world upside down. I was mad again. I didn’t understand. Why her? She has a 5-year-old son; she’s so young and beautiful. I don’t want her to have to endure an ounce of pain or suffering like I have been for six years. I want her to live a long healthy life, have more babies and finish her schooling. Her disease has progressed quickly and she gets sicker by the day. My heart is broken, as are my parents. Two of their three children have this terrible disease and they are often overwhelmed.”

When I ask Lisa what the doctor’s have said in regard to the fact that both she and her sister have been diagnosed with the same disease she says, “My doctor at Cleveland Clinic, Dr Chatterjee, who is top of the field in Scleroderma, confirmed he had or has patients who are related and that evidence is slowly emerging that other siblings or parents/children have Scleroderma. I think it’s something in the future that may emerge but as you and I both know too well all things in Scleroderma research take time. “

Lisa continues,, “I want to see a cure for scleroderma before my time on the Earth is done. I want to save my sister and all those who suffer. I want people to know what this disease is, what it does to you – the good, the bad and the ugly. I want to spread awareness, raise money and find a cure. And, I also want people who are newly diagnosed or those who are sick but don’t know what’s wrong to know that it’s okay. We can help them navigate and try to ease their fears.”

“Even though I am still mad at times,” she continues, “I have also found a lot of peace and that has helped me greatly. Optimism helps greatly, too. Six years ago I felt like I got a death sentence; last year I felt my sister got hers. But, I don’t feel that way anymore. I feel fueled to fight, stay strong and educate and advocate!”

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