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Published June 19, 2013, 11:40 PM

Nashua woman gets diagnosis, treatment for disease after years of searching

NASHUA, Minn. - Mindy Willert suffered through years of pain, neurological issues, extreme bloating and weight gain.

By: Tracy Frank, INFORUM

NASHUA, Minn. - Mindy Willert suffered through years of pain, neurological issues, extreme bloating and weight gain.

She was put on a gluten-free diet and told she was just fat. Diet and exercise seemed to make her problems worse, but nobody believed her, she says.

She felt isolated, judged and lost her formerly high self-esteem.

Then, a little more than three years ago, a medical professional told her it sounded like she had Dercum’s disease.

Willert, 42, had never heard of the disease, so she started researching it and came across Dr. Karen Herbst, an endocrinologist and expert in fat disorders at the University of California, San Diego.

Dercum’s disease, also known as adiposis dolorosa, is a syndrome of painful growths in subcutaneous fat. The fatty growths can occur anywhere from the scalp to the surface of the foot. There are different types of Dercum’s disease, and it seems to affect people in different ways.

People who have fat disorders fly in from all over the world to see Herbst.

“They need a diagnosis because usually they’re not believed,” she said. “Providers just don’t understand fat disorders, and they don’t know how to diagnose.”

Many are told to watch their diet and exercise more. But exercise tends to make them feel worse, and the fat that is connected with a fat disorder is very, very difficult to lose, she said. Some say the only way to get rid of that fat is by liposuction, she said.

“I’ve seen some people who have done really well and lost the weight, but even when really they’re really thin, the painful nodules in the fat remain,” she said.

Herbst said all of her patients are guinea pigs – what works with one person doesn’t necessarily work with another.

“Nobody knows what to do with these patients,” Herbst said.

Herbst suggested Willert undergo a gastric sleeve (a weight-loss procedure that removes part of the stomach to make people feel full more quickly) to get rid of her excess fat. She lost a lot of the normal fat, but it left painful lumps behind.

“She’s still suffering from Dercum’s disease so bariatric surgery is helpful, but it’s not the answer,” Herbst said. “The usual things that you would do for an obese person don’t work with Dercum’s disease.”

When a person has good skin and tissue elasticity, it squeezes the fat and helps move lymph fluid, but a person with Dercum’s disease has lost the structure in their fat, and it no longer has the elasticity it needs for the lymphatic system to clear the fluid, Herbst said.

When Willert was able to name her disease, she felt validated, but she also felt scared.

There’s no cure for Durcum’s and not much is known about it, her husband, Tim Willert says.

Willert’s body is filled with painful, non-cancerous growths. Some are palpable and others are deep within her tissue. Sometimes she can feel them growing, she said.

Still, to most people, she doesn’t look sick, Willert said.

“It’s an invisible disease,” she said, adding that when she’s inflamed, people just think she’s fat or pregnant.

Willert only wears maternity clothes because her stomach can swell overnight to the extent that she looks like she’s six to nine months pregnant. Often, people will ask her when she is due. But instead of letting it bother her, she uses it as an opportunity to educate people about her rare disease, she says.

“I welcome it because I want everybody to know about this,” she says.

Dercum’s disease is a progressive disease, but Willert is doing better than she was a few years ago and has lost 135 pounds because of the help she’s gotten from Dr. Herbst, she says.

Willert, who is on disability, said taking care of herself is a full-time job.

“I can’t take care of myself 100 percent of the time,” she said. “I don’t have the strength.”

She has drastically changed her diet, eating mostly whole, natural foods and eliminating all processed foods.

Since her lymph doesn’t drain properly, Willert wears a Flexitouch device twice a day, if possible, for more than an hour on a quarter of her body at a time that pushes the lymph through her system.

Some days are harder than others for Willert. Since her disease affects her cognition, she has trouble focusing. She also tires easily and never knows how much she’ll be able to handle from one day to the next.

“The hardest part is the unknown,” Willert said. “Some days I can’t turn a doorknob or hold a cup of coffee.”

Now her daughter, Harly, has started to notice painful lumps under her skin, and Willert’s other children are showing possible symptoms of Dercum’s disease, too, she said.

Her son, Cody, also has painful tumors in his body and her other daughter, Lexis, is tired all the time, Willert said.

Willert says she feels guilty about it because Dercum’s disease can be a genetic illness.

Harly, 16, had to give up cheerleading and her dream of becoming a police officer, she said. Now she’s considering a career in occupational therapy.

In the meantime, Herbst is working on finding the gene responsible for Dercum’s disease.

“Until we know what the genes are, I don’t know how we’re going to progress further in this field,” she said.

Willert also sees Gabe Evenson of Blue Water Therapy in Fargo, an occupational therapist and certified lymphatic therapist who does manual lymph drainage – a massage technique to stimulate the lymphatic system.

Evenson said an important lesson to learn from Mindy’s story is the importance of perseverance and self-advocacy.

“Patients know their bodies better than anyone else,” he said. “Mindy continued to advocate for herself and to search for answers to her symptoms until she was finally diagnosed with Dercum’s.”

Readers can reach Forum reporter Tracy Frank at (701) 241-5526