"Shamekka* may appear “normal” on the outside, but like so many others with connective tissue disease (CTD) — a broad term for disorders that affect the body’s organs, joints, and structural systems — she is very often living with a great deal of pain.1,2 The 43-year-old mom of three tells Refinery29 she feels like a “hot mess” internally, with multiple symptoms (think fatigue, rashes, swelling, weakness, joint pain, and more) affecting multiple areas of her body almost constantly. Life, she adds, can be unpredictable, complex, and frustrating.
Out of the more than 200 different CTDs that are known to exist,2 Shamekka has been diagnosed with five of them, one of which is scleroderma, where the immune system attempts to repair healthy tissue with extra collagen, causing hardening and tightening of the skin. Scleroderma is more than a skin condition, though — it can also cause serious lung complications such as pulmonary arterial hypertension (PAH),3 which is a rare, progressive disease4 marked by abnormally high blood pressure in the arteries of the lungs.5
PAH can occur in people with different CTDs,6 but it is most common in those with scleroderma.7 A study showed that Black women are especially vulnerable to it compared to other races — they're 2.5 times more likely to have it,8 in fact. Those with scleroderma can experience a delay in diagnosis of up to four years, so proper education about the disease is important."
Meet Shamekka, an advocate who lives with eight chronic illnesses, including connective tissue disease. Here, she shares her story.