Kristy Smith of Gloucester once raised tens of thousands of dollars for people living with diabetes, but now she has to use those fundraising skills for herself as she battles a rare disease.

An experimental stem cell treatment offered by a doctor in Arizona is the only option currently available for Smith hoping to cure her Dercum’s disease, one of the rarest diseases in the world with no FDA-approved cure.

Smith was forced to resign her job as chief executive district manager for Subway in 2017 when her diagnosis became clear. “You look fine on the outside but it wreaks havoc on the inside,” she said of the ailment which she said is the third rarest in the world. Her case is even more abnormal, as the disease usually only occurs in older or obese women. Smith went from running marathons to being unable to walk too quickly without pain.

Dercum’s disease is characterized by small, fatty tumor growth throughout the tendons, ligaments and subcutaneous tissue of the body, creating nearly constant pain. The growths can also negatively affect circulation and cause body parts to become inflamed to the point of Smith’s skin changing color. If Smith gets overheated, she can experience inflamed limbs and if she gets too cold her hands turn blue and black from poor circulation. “I’m either going to go through hellfire or the North Pole,” she said of the pain.

There is no FDA-approved cure available and most treatment plans focus on symptom management. The disease is so rare that it is not profitable for a drug company to research a cure.

“Pharmaceutical companies don’t want to spend the money for any sort of antidote because there’s not going to be anything in it for them,” said Smith of her situation. In the meantime, she takes 26 medications to attempt to control the symptoms of Dercum’s. Though Smith is fortunate enough to have access to Tri-Care insurance to cover her prescription drugs, many people would drown in the costs associated with treating the symptoms of this disease.

However, an experimental stem cell treatment by Dr. Karen Herbst of the University of Arizona may offer some hope. Herbst is a Subcutaneous Adipose Tissue Specialist and one of the only doctors in the country specializing in the treatment of Dercum’s and similar diseases. Her treatment, though it lacks FDA approval, has an 87 percent cure rate, according to Smith, and has already cured several people of their Dercum’s diagnosis.

The hurdle for Smith is that insurance companies, even Tri-Care, won’t pay for the treatment, so she would be forced to foot the $20,000 bill herself.

When local business owners, including those at the Subways she used to help oversee, heard her story they joined in a fundraising campaign to try to get Smith the treatment she needs.

Subway stores in Gloucester and Mathews will be handing out fliers with a link to a donation page to help Kristy’s cause. Eggheads Diner, The Happy Oyster, Ann’s Family Diner and Sal’s Pizzeria will all begin collecting donations and three restaurants—Damon’s in Gloucester, Sandbar in Virginia Beach, and Brown Chicken Brown Cow in Hampton—have all agreed to host events to raise money for the cause.

The Zac Brown Band is even lending a hand to help Kristy get her treatment by donating a guitar signed by the band and previously played by the band’s guitarist Coy Bowles to auction at one of the benefit events. 

“I’m just crying out for help because it is miserable,” Smith said of her situation, stressing how the stem cell treatment’s success could help bring awareness of that method as a medical option for others with the condition. “Eventually I want to start a nonprofit to help others who need this treatment,” Smith added.

She also worries that her daughter, who was recently diagnosed with an autoimmune disorder, could go on to develop the disease herself. “That’s how it started for me, too … autoimmune disease,” she said.

In the meantime, Smith continues dealing with daily pain as she waits for a cure. When asked what she would do if the treatment was able to cure her, she said, “I want to go back to school and become a doctor to work on these rare disorders and find out what the root is that’s causing these things.”

To learn more about Kristy’s story, visit her website, thekure.info.