Living with a rare disease can be difficult and scary for some, especially during a global pandemic that has affected millions. This Nottingham father knows these feelings firsthand; he lives with leukemia and Dercum’s disease and has contracted the virus twice since last March. Carl Hallam speaks about the difficulty he and his family have faced over the past year.
About Dercum’s Disease
Also known as Anders’ syndrome or Dercum-Vitaut syndrome, Dercum’s disease is a rare, progressive condition characterized by painful lipomas that form on the body. These tumors often press on nerves, resulting in severe pain, weakness, fatigue, and mental disturbances like depression. Affected individuals often experience obesity, joint pain, high blood pressure, headaches, tremors, early congestive heart failure, a blue tint to the skin, nosebleeds, and severe hypothyroidism as well. Medical professionals are unsure as to what causes these symptoms, but there are a number of potential causes: genetic inheritance, the use of corticosteroids, abnormalities in the autoimmune system, and disturbed endocrine function. There is no cure for this condition; treatment is symptomatic and supportive.
Carl’s Story
Carl, a 38-year-old father of four, was diagnosed with Dercum’s disease over twenty years ago at age 17. The fatty tumors leave him in constant pain, as many of them have latched onto a nerve. Hundreds of tumors cover his body, and he says he ignores the pain for his children. He wants to be the best father that he can for them. Additionally, he thanks his partner Jo, who he says he could not go through his life without.
Besides the symptoms of Dercum’s disease, Carl also must handle the effects of leukemia and the corresponding chemotherapy. Diagnosed in 2016, he must now take oral chemo every day in order to manage the cancer.
As if these two illnesses are not enough, the Nottingham father has tested positive for COVID-19 twice within the past three months. Back in January, both Jo and Carl tested positive for the respiratory virus. It left Carl immobile, as it piled further symptoms on top of those caused by Dercum’s disease.
A month later, Carl was given the first dose of the COVID-19 vaccine, making him think that he was safe. On March 3rd, he tested positive for the second time. He’s hoping that his partner avoids contracting the virus, so that somebody can be around for their children.
Looking Forward
Carl and his family are moving through any issues presented by his health problems day by day. He is so thankful to be surrounded by those he loves, and he knows that he couldn’t do it without them. Hopefully, he will soon be virus-free and able to enjoy the fresh air again.
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