Demeshia Montgomery, 38

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At 19 years old, Demeshia Montgomery gave birth to twins: a boy and a girl. But tragically, her babies were born 27 weeks early – weighing in at only one pound each.

“My daughter made it to six months,” Demeshia said. However, she passed the day she was sent home from the hospital. And while both babies required heart surgery, her son went into the operating room a total of three times. He died during the last one – leaving Demeshia more devastated than she ever thought possible.

But believe it or not… this was only the beginning of the heartbreak.

“Exactly one month later, I began having really extreme pain in my fingers,” she said. “I also had a black mark on my arm, which I thought was a bruise.”

At the point when she could no longer take the pain, Demeshia saw a dermatologist, who discovered she had morphea. That diagnosis ultimately came with a referral to a rheumatologist, who diagnosed scleroderma with Raynaud’s syndrome.

At that appointment in 2001, Demeshia was warned to “get ready to feel some of the worst pain ever.” Understandably, she left feeling truly terrified. But unfortunately… the warning was warranted.

In the years to follow, Demeshia would experience:

  • Sore hands that continued to contract more and more, until the left became locked in a claw position
  • Painful ulcers that led to gangrene and the removal of four fingertips
  • Tightened elbows, with an arm that’s now unbendable
  • Blackening skin, with light blotches spread all over
  • Lack of blood flow in her foot that led to the loss of her pinky toe
  • The loss of another child, who died in utero during the fourth month of pregnancy
  • The loss of several friends to scleroderma

Even still, her optimism is inspiring.

“I tell you this story to share how a disease so horrible can be a gift at the same time,” Demeshia said. “Over the years, I turned my grief, frustrations and fear into a motivation.”

Now, at age 38, Demeshia is determined to help increase awareness and fundraising for research. In fact, her advocacy efforts made Ohio the first state to have a bill for Scleroderma Awareness Month. And she’s currently working with a team determined to have Scleroderma Awareness Day proclamations in all 50 states.

“I pray that new patients will have more information and knowledge available to them,” she said. “I’d like them to know it’s not a death sentence, but an opportunity to experience life in a different way. And if sharing my story comforts even one person… then all the pain was worth it.”