Cherokee Nation citizen Leigh Beyard, of Claremore, Okla., points to an area on her leg where there are several lipomas or painful fatty tissue growths. Those with the rare condition, Dercum’s Disease, have several lipomas mostly on their arms, abdomen and legs. TESINA JACKSON/CHEROKEE PHOENIX BY TESINA JACKSON Reporter CLAREMORE, Okla. –
When Cherokee Nation citizen Leigh Beyard first felt pain throughout her body, the doctors at Claremore Indian Hospital could not find what caused it. It wasn’t until after sharing a newspaper column with the doctors that they were able to diagnose her with Dercum’s Disease, a rare condition characterized by painful fatty tissue growths called lipomas. “I want them to be able to help me find out what causes this,” Beyard said. “Some people have had this for 15 years. Other people have died within three years of being diagnosed.” Dercum’s Disease, or adiposis dolorosa, was discovered in 1888 by neurologist Francis Xavier Dercum. Although it’s more common in women, 16 percent of reported cases are male. Symptoms include lipomas, usually around the legs, arms and abdomen; generalized obesity; weakness and tiredness; depression; irritability; confusion; and possible dementia. “People with Dercum’s Disease have problems in every system,” said Dr. Karen Herbst, one of few doctors in the country who researches the disease. “They have trouble sleeping. They have depression and anxiety. They have shortness of breath. They have palpitations. They have gastro-intestinal problems like constipation and diarrhea, irritable bowel, and they have pain.” Beyard, 47, said when she first went to Claremore Indian Hospital she waited eight hours for a doctor to say, “I can tell you what your problem is right now. You’re fat.” “It’s not due to being obese. It’s actually that the underlying Dercum’s Disease is causing people to become more obese,” Herbst said. “I think obesity contributes to it. I think it kind of sets it off and then when it sets it off then the people become even more obese.” The disease’s cause is unknown because of the little research that has been conducted. Also, there is no cure. Dercum’s Disease is often controlled with pain medication. In some cases, surgery or liposuction can be performed to remove the lipomas, but results often come back inconclusive. Beyard first felt pain five years ago and was diagnosed three years ago. She now sees a doctor at OMNI Medical Group in Claremore who is helping her research the disease. “We’re just wanting to find out more to see life expectancy and everything like that because they told me that if these tumors are on my lungs then I may not live two years and that was eight months ago,” Beyard said. When a friend of hers, CN citizen Aubrey Skaggs, started having similar symptoms, Beyard suggested that Skaggs mention the disease to her doctors. After feeling pain for six years, the doctors diagnosed Skaggs with Dercum’s in 2011. “I had no idea what it was and I go to the Indian hospital here in Claremore. And the first time I went in they didn’t have any idea what it was,” Skaggs said. “The doctor I talked to that day had never even heard of it.” Skaggs tried to get a referral for another doctor but was denied based of funding. She continues to work and takes anti-inflammatory for the pain. “It’s pretty painful, but it’s something I try to deal with everyday,” she said. When Herbst started researching the disease, she found that out of 110 people she surveyed, 20 percent of them had Native American blood. Her research also shows that Caucasian and Native American are the dominant races with the disease, but she can’t explain why. In most cases, Dercum’s Disease has been sporadic and thought to be hereditary. Beyard and Skaggs both had family members who had similar symptoms but was never diagnosed. “In some cases, nobody else in the family is affected,” Herbst said. “So it could develop spontaneously like a new mutation in that person. But in other cases, it’s clearly in the family.” To lessen the pain, Beyard and Skaggs have dieted to lose weight. They also find exercise painful. Herbst said she tries to help those with Dercum’s by changing their diet and exercise regimen. “I do a multipronged approach to help people,” she said. “Even though it’s really hard to lose the fat by diet and exercise, I still have them change their diet to one that’s as healthy as possible. So lots of fruits and vegetables.” Herbst said exercise causes inflammation in the body. People with Dercum’s can’t handle the inflammation as well as healthy people, so she advocates swimming. “We encourage swimming as the most important thing to do because the water kind of acts as compression outside of their body. And as they move in the water, the water squeezes the fat in between the muscle and it tends to help mobilize fluid,” she said. When Dercum’s Disease was first discovered, doctors didn’t have the tools they have today to research it. For many people who have the disease, it leaves unanswered questions. “I want to find out so that maybe other people won’t have to go through the same thing that I had to go through,” Beyard said. tesina-jackson@cherokee.org 918-453-5000, ext. 6139 Latest headlines... 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