Doctor’s Book Follows His Journey Living With Rare Autoimmune Disorder

Dr. Tracy Scott was diagnosed with Stiff Person Syndrome in 2017. He recently released the book, Doctor to Patient. Photo provided by Lydia Eady.
Dr. Tracy Scott was diagnosed with Stiff Person Syndrome in 2017. He recently released the book, Doctor to Patient. Photo provided by Lydia Eady.

Doctor’s Book Follows His Journey Living With Rare Autoimmune Disorder

By Tia Carol Jones

Tracy Scott, Psy.D., started experiencing little spasms that would manifest then go away. As a former athlete, he kept an eye on the spasms. Over time, they started to increase in frequency and intensity. He talked to his doctor and started making changes to his diet. It turned out that Scott has Stiff Person Syndrome.

According to Johns Hopkins University, Stiff Person Syndrome is a rare autoimmune neurological disorder that most commonly causes muscle stiffness and painful spasms that come and go and can worsen over time; however, some people experience other symptoms such as an unsteady gait, double vision or slurred speech; SPS symptoms are thought to be related to which type of SPS a person has. Those who have the disorder can work with a specialist to maintain symptom control, but there is no treatment that cures it. Stiff Person Syndrome affects one in a million people.

Scott, who was diagnosed with Stiff Person Syndrome in 2017, wrote the book, “Doctor to Patient: Living with Stiff Person Syndrome.” It took him three years to write because he was battling the spasms and stiffness and had to take breaks. The book details his journey living with Stiff Person Syndrome, what he has done and how he is living his life with a chronic health issue. It also details his life, transitioning as someone who was an educator and professional to the role of a forever patient. In it, there are strategies Scott used to help him make the transition and find his purpose and meaning in his life.

Scott said that while he didn’t find a magic pill to deal with his disorder, he had to adjust his entire lifestyle and find medication to help him deal with the symptoms. Scott said he hopes that readers take away that whatever they are dealing with, the pain can never be bigger than their agency and purpose. It is something he had to learn. He said it was important for him to focus on his purpose instead of focusing on his symptoms. He realized that no matter what he was dealing with, his life still had meaning.

“It was important to me to live out that meaning and the impact that I make as a result of living out that meaning and purpose in my life, it really matters to me more than the illness itself,” he said. He added that while Stiff Person Syndrome is something he deals with 24/7 and affects most areas of his life – family and friends -- the volume of his time is spent focused on his purpose.

Scott said that he wants people who read the book to know that if they are dealing with Stiff Person Syndrome or any other disease or chronic health issue their life isn’t over. He said that life can still have meaning and significant value and that it is up to the person to find that value and meaning. He said once people find that value and meaning and help themselves, they should go out and help other people who are dealing with similar issues.

“At the end of the day, everyone is dealing with something that others know nothing about, and I’ve learned that valuable lesson,” he said.

In addition to the book, Scott has created radio programs which include Wisdom for Joyous Living, Ask the Doctors and Life Perspectives.

For more information about Dr. Tracy Scott, visit www.drtracyscott.com.

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