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Terry E. (Mojoy the Clown): Morphea Profunda Linear Scleroderma

I volunteer as Mojoy the Clown.

I am a forty-seven-year-old woman and was diagnosed with this disease on September 13, 2004.

I am a hard worker. I have worked many jobs. The last three years I have been a caregiver for Alzheimer patients. And this past year I started working as an Activity Director at an adult care facility. I also work as a professional clown on the side, volunteering my time. That is when I started having trouble.

My right lower leg started to swell and the ankle grew big. It hurt all the time. But stubborn as I am I did not have it checked until my current boss told me to go to the doctor, so I did. Then it started.

I had my primary care doctor stumped so he sent me to a rheumatologist. He was stumped and then sent me to a specialist in San Francisco, Dr. Kari Connelly, who looked at me and immediately diagnosed me wit morphea profunda linear scleroderma. By that time my whole right leg was affected and I was in a lot of pain. I have started a lot of medications such as prednisone and methotrexate and Folic Acid, but they are still not helping the pain and muscle spasms.

Now it has moved to the other leg and also, my eyes have been giving me problems. So now I have gone to an eye doctor and he thinks it is also part of the disease. I am still in limbo with that and the doctors are working on figuring it out, all who are wonderful and curious at the same time.

I am on medical leave from my job, which is the hardest thing at this time. But I have many people supporting and praying for me and my spirits are staying lifted. This causes me to help others and encourage them. I will fight this with all my might and continue to help some way to find a cure.

Thank you for reading my story. All I can say is " Do not give up". There will be a cure. I would be happy to hear from others who need comfort. Bless you all.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.