In 1993, and only two weeks after having given birth to her second child, Becki Lanser of Cary, North Carolina, was experiencing severe muscle weakness and fatigue.
In a telephone interview, she said, “It was difficult for me to pick up my newborn and I was very sore and had a skin rash. I felt like I had been to the gym and exercised times ten. I had extreme difficulty getting up from a seated position. My skin, which was itchy and painful, looked like it had been boiled in hot oil.”
By the time of her diagnosis three months later, she could not raise her arms even to brush her teeth. A dermatologist diagnosed her with dermatomyositis, which is a chronic, inflammatory, skin and muscle disease that comes with an accompanying reddish and scaly rash.
Lanser was on complete bed rest her first year fighting the disease, until anti-inflammatory medication kicked in to somewhat improve her condition. She had to lean on her mother to help care for her two young children, and her mother would stay with the Lansers ten years.
In 2007, her skin rash, which had always been treatment resistant, went “out of control,” she said. For example, when her eyebrow would itch intensely, she would rub her forehead to avoid scratching the eyebrow, and doing that would be enough to cause her forehead skin to crack and bleed. She lost perhaps two-thirds of her hair. All that went on about five years until only two years ago, when doctors found better medication.
Today, she still struggles, saying, “I’m relatively sedentary and don’t really exercise, except for walking. I have extreme exhaustion (most of the time) and a lot of muscle weakness. It’s difficult for me to go up any kind of incline, such as stairs. I’ve never been in remission.” She takes about 30 pills a day.
She copes relatively well, she said, because of having a practical nature that concentrates more on managing symptoms than trying to “beat” the disease, a strong religious faith, a devoted husband and children who help with most house chores, and physical therapy.
To people newly diagnosed, she suggested visiting www.myositis.org. She said, “When you’re first diagnosed, it can be traumatic and overwhelming. But there is light at the end of the tunnel. You do what you have to do. (As for me), I look forward to heaven.”
