Rare Disease Day: Woman describes life with ‘painful’ Dercum’s disease

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SHALLOTTE, NC (WWAY) — Imagine every minute, every second, you feel pain throughout your body. One woman in the Cape Fear says a rare disease has made that her reality.

Meet Tamara Toman. She lives with Dercum’s disease.

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“Some of them start to burn or it’s like being stabbed multiple times,” Toman said.

Doctors diagnosed her with the disease several years ago. On different parts of her body are these bumps called Lipomas, which are the source of the pain she feels.

“When you touch the Lipomas, they’re very painful,” she said. “It’s sharp. It’s a constant pain that I always have but when I bump my lumps or things like that I get extreme pain. Excruciating pain.”



That pain comes from doing basic things like housework or even going to the mailbox just a few feet away from her home.

In order to deal with the pain she uses different medications, but with the opioid epidemic and doctor offices cracking down on prescribing narcotics, it’s making things difficult for her to take the edge off the pain.

“I get both sides of that,” Toman said. “I get that it is an epidemic. I get that something needs to be done. But not at the expense of people who live with chronic pain and need that medication to have any quality of life.”

She says eventually she will lose full mobility because of Dercum’s disease. A disease where there’s only treatment and no cure.

Toman says there are not many treatments to deal with the disease. She started a support group on Facebook for other people dealing with it and communicates with people across the world living with the rare disease every day.

If you are living with Dercum’s disease and would like help, click here.