Tameka first became aware of Scleroderma when she experienced breathing difficulties and coughing when sleeping and thought she was experiencing a recurrence of bronchitis. Her doctor agreed and prescribed ineffective medication. Then, one day at work she noticed significant swelling of her feet and a blue discoloration of her hands and feet. The rheumatologist she was referred to, by examining her fingers, immediately diagnosed Scleroderma.
The first question Tameka asked was “ Will I die?” The doctor “diplomatically” told her people could die from many diseases if they didn’t take care of themselves. Seeking clarification Tameka turned to the internet and saw people who had lost limbs and who had become deformed. Understandably, she became depressed and wasn’t even able to get out of bed. She realized she needed to take constructive action. The idea of attending support groups worried her because she was concerned that she’d imagine that she had everything that they talked about. Tameka went on her first Walk for Scleroderma, and that was unfortunately not a positive experience. She met a woman with a tracheotomy who was in a wheelchair who didn’t realize that Tameka was walking for herself because she “looked great”. Seeing this woman made her feel guilty for complaining about her own circumstances and she wondered “How am I supposed to look?” At a gathering after the walk, her aunt was talking with survivors who had suffered for years with Scleroderma and some had fingertips or deformed faces.
Crying, Tameka decided she wasn’t going to attend any more walks.