Denise West and Donna Crouch have much in common. It’s no surprise that they’ve become friends and grown to support one another. Perhaps what they have most common in common is a shared experience with the rare Dercum disease. Follow their story below, or in The Examiner to learn more about their experiences and support efforts.
In eight weeks, Denise West had 13 growths removed from her body. In the course of her lifetime, she has had more than 300 removed. She gains or loses 13 pounds in about as many days seemingly by chance. Most people would be tempted to take action. Diet and exercise, or a careful routine of supplements. Denise, however, doesn’t have the luxury of simple solutions.
Denise suffers from Dercum disease. Dercum disease causes the growth of agonizing fatty lumps. They can grow or appear anywhere on the body. Spontaneous changes in weight or also symptoms of the disease. Exhaustion, fatigue, and weakness are also common symptoms patients have to deal with. Sometimes depression, or dementia can even be caused by Dercum disease. The causes of Dercum disease remain unknown. To learn more about it, click here.
Most doctors remain unaware of Dercum disease. That’s what caused Denise to move to Tasmania a little over a year ago.
In Tasmania, Denise found not one, but three doctors who were knowledgeable of her condition.
Being able to have medical recognition of her disease, and a proper diagnosis made a huge change in Denise’s life. She had been through decades of misdiagnoses and misunderstandings. She felt haunted by the threat of cancer.
Even more encouraging, Denise found a friend who would understand. Donna Crouch has the same rare disease as Denise. They had both been misdiagnosed, and scared by the prospect of cancer. Until then, Denise’s experiences had led her to feel alien. When even doctor’s didn’t understand what was going on with her body, she resorted to science-fiction descriptions to fill the gap.
“It was like something Sigourney Weaver gave birth to – it was really ugly and strange, and it had tentacle-like things,” Denise said of one of her removed lumps.
Denise cried for several days after receiving a proper diagnosis. She finally felt validated.
Donna understood immediately.
Even after finding her diagnosis, Donna experienced difficulties. There is no cure for Dercum disease. It continues to make her life difficult even on the best of days. Donna had a job working four hours each weekend day. She had to give that up due to her condition. Pain and fatigue made it necessary for her to spend the entire week resting and preparing just to work those short hours. She felt her self-esteem and value being stolen.
Together, Denise and Donna have found some of that meaning and purpose again. They’ve become united against the pain Dercum disease, and the pain of isolation.
Together, they hope that their experiences can be used to raise awareness for their rare condition. As awareness and knowledge improves, they believe the fear and suffering of others can be relieved by more quickly receiving an accurate diagnosis. The two friends also plan to open a support group and reach out to any other people suffering from Dercum disease in Tasmania.
