23/06/2025
🖍 What disabilities can occur if systemic sclerosis continues to progress?
🖍 Today, I’m sharing my observations and questions from discussions with fellow systemic sclerosis patients I’ve gotten to know. The noticeable external disabilities include:
⭐️ 1. Face - Most people experience muscle contraction, and facial fat diminishes, making the cheeks sunken and the nose more prominent. The face appears thin and misshapen, lips become thinner, the mouth contracts and narrows, and chronic jaw pain may occur. The more the jaw hurts, the narrower the mouth becomes because it can't open wide. Some need to eat with a coffee spoon, and others may not have sunken cheeks but a rounded, swollen face, resembling a "moon face," due to prolonged steroid use. However, they can also suffer from the problem of thin lips and a narrow mouth.
⭐️ 2. Hands - Chronic swelling, constriction, and stiffening of blood vessels reduce blood and lymph circulation, leading to tissue ischemia, resulting in inflammation, ulceration, and tissue necrosis. If wounds occur, they heal slowly and are very painful. Some patients may need to have fingers amputated to prevent bloodstream infections. Inflammation in finger and wrist joints causes tendon contraction and hardening, leading to bent fingers, limited finger movement, and reduced wrist rotation, known as joint stiffness. Many also experience shortened, stubby fingers, along with calcium deposits at the joints.
⭐️ 3. Feet - The same problems seen in the hands can occur in the feet.
⭐️ 4. Elbows, Ankles, Ears - These areas often develop hard-to-heal wounds with inflammation and tissue necrosis.
⭐️ 5. Bends in the arms (elbows) and legs (knees) - Inflammation leads to stiffness and difficulty stretching or bending. Arms cannot fully extend and bend inward toward the body. Sitting cross-legged or squatting on the floor becomes impossible.
⭐️ 6. Shoulder Joint Inflammation - The shoulder joints become stiff and painful, causing sleeplessness. Lifting the arms to wear clothes becomes difficult, and unhooking a bra from the back is impossible. Raising the arms above the head becomes limited.
🖍 In addition, patients often experience darkened or patchy skin, itching, and dry skin.
🖍 From my experience, addressing external disabilities involves self-care based on the five aspects of "Reset My Life" and the "5-A Principles" of the Ministry of Public Health. These approaches help reduce inflammation, manage chronic inflammation, and regularly perform physical exercises on affected areas to prevent tendon contraction and joint stiffness.
P.S. Even if your blood test results are good, with normal inflammation markers, don’t ignore your body. If you still have swelling, pain, and frequent wounds, it indicates your body is still experiencing chronic inflammation and remains at risk for disability.
Next time, I’ll discuss the progression of this disease within internal organs, especially the digestive and respiratory systems, and how it impacts the lives of patients with systemic sclerosis.
🖍 Toi Srisomwong
14 Years Living with Scleroderma
