Amanda was diagnosed with scleroderma and Raynaud’s in 2015, when her fingers were black and blue. Years earlier, she thought something was wrong and the doctor told her “you’re getting old, so get used to it”.
When I was fully diagnosed I went into severe depression and began to take medication for depression, which I later found out was exacerbating some of the symptoms.
Before Amanda was diagnosed, she had struggled to walk at the age of 42. Her doctor suggested she had borderline rickets from working in a nightclub. The scleroderma caused Amanda a lot of pain and she got very tired. She could barely walk. Her hands curled and were black and blue. She had to drop many appointments with friends and family and if she made it out of the house she’d use walking sticks and a wheelchair. She could not dress herself.
Amanda takes 38 tablets a day to keep moving. She was prescribed Bosentan, a drug used for heart circulation, which has helped diminish many of her symptoms. However, she is struggling with issues with her jaw. She suffered ulcerations in the mouth – one excruciating ulceration on her tongue lasted a whole year and led to multiple infections.
A biopsy has found that the ulcerations have stretched and dislocated her jaw and now she is losing teeth, which have become brittle. Her mental health has suffered hugely and so she has taken a lot of courses to focus on her state of mind, which keeps her positive.