An Introduction to Skin Health and FOP

The skin is the first barrier of your body that protects you from the environment, including bacteria and fungi, and is connected to all other organs and can give us clues about internal diseases. While there have not been any formal studies, there are some links between skin issues and FOP.

WHAT IS A DERMATOLOGIST AND WHY SHOULD PEOPLE WITH FOP WORK WITH THEM?

Dermatologists are medical doctors who specialize in skin, hair and nails and the disorders that affect them. They can also handle cosmetic disorders, such as hair loss and scars. Your dermatologist will examine you, order lab tests, make a diagnosis and may treat your condition with medication or a procedure.

WHAT CAUSES SKIN ISSUES FOR PEOPLE LIVING WITH FOP?

• Consequences of FOP, like immobility, position of the body, and poor blood circulation
• Medications
• Individual skin problems (genetic, environmental)

WHAT ISSUES SEEM TO BE MORE COMMONFOR PEOPLE WITH FOP?

• Acne: Like anyone with acne, treatment can include salicylic acid soaps and lotions with peroxide benzoyl among others. There are many medications that you can find over the counter, but you may need topical and oral antibiotics. If that is the case, it is time to look for a dermatologist.
• Hypersensitivity to insect bites: Apply bug repellent, wear protective layers of clothing, discuss with a dermatologist potentially using 1% hydrocortisone treatment, take antihistamines, and keep insect bites well cleaned.
• Irregular, intensely pigmented moles: Check your skin at least once per week, both the visible and not-so-visible areas. Use the ABCDE method for early detection of melanoma, which can be deadly.
  • Asymmetry
  • Borders are uneven
  • Color (dark black or has multiple colors)
  • Diameter (greater than 6 mm)
  • Evolving (changing in size, shape and color)
• Seborrheic dermatitis: Seborrheic dermatitis, also known as seborrheic eczema, affects oily areas of the body like the scalp, face (sides of nose, eyebrows, and eyelids), in and behind the ears, chest, underarms, pubic area, and between the buttocks. It appears as oily, scaly patches, red skin, or stubborn dandruff and affects all ages.
• Skin tumors: Rare ones like Merkel cell carcinoma and frequent ones like basal cell carcinoma or spinous cell carcinoma

Check your skin once per week. Wounds that do not heal, have strange pearly borders or that bleed easily need to be checked by a dermatologist

Skin issues caused by medications

Any drug can cause skin reactions, even those you are used to. Pain killers and anti-inflammatory drugs are always suspicious. Pay extra attention to steroids and retinoids, such as Sohonos^™.

Symptoms:

• Dry lips
• Dry skin, eczema and itching
• Monomorphic acne eruption
• Madarosis, or the loss of eyebrows
• Cutaneous rash
• Hives

Skin issues caused by FOP

Dry skin: Extra bones compress the vessels causing the skin to dry out. As a result, you may have very dry skin, especially on the extremities of your body. Take care not to make your skin even dryer.

Intertrigo: Intertrigo is an inflammatory condition of the skin folds, induced or aggravated by heat, moisture, maceration (skin softening and breakdown), friction, and lack of air circulation and is worsened by infection. Having FOP can freeze your body in strange positions. This means that besides the usual folds of the human body you may have many others that are difficult to reach, dry, and clean. Consequently, you may develop intertrigo.

To prevent this condition, dry yourself thoroughly using a cool blow-dryer setting or fan and use menthol powder, talcum powder, or cornstarch which can help absorb the humidity. If you find redness, wounds, or pus, consult a dermatologist.

Pressure sores: Know the pressure places on your body (commonly the heel, tailbone, elbow, shoulder) and the location of extra bones that may need to be protected from the pressure (on your back, sides, hips and bottom).

If you have a sore or wound, dampen some gauze with boric water (3%) and leave over the wound for 5 minutes. Then, if you see pus, apply antibiotic cream (Neosporin or creams with pain relief and antibiotics). If it doesn’t get better, consult a dermatologist as you may need oral medication.

Use pillows, cushions, a foam mattress topper, and/or air cushions and change positions frequently. You can customize pieces by cutting them to accommodate an area with a protruding bone to reduce pressure.

Blisters: Blisters can be a sign of lymphatic problems or bone compression on lymphatic vessels. Lymphedema can make the skin cells lose adhesion to each other and blisters may occur.

Don’t squeeze or pop blisters. Compresses of boric water (3%) and antibiotic creams can help. Keep blisters clean to avoid skin infections.

Skin infections/sepsis: Go to a vascular specialist or a dermatologist for oral medication.

Skin and nail fungus on the extremities: Poor circulation can lead to fungal infections. It is important to recognize and treat these conditions and avoid the development of bacteria.

Stretch marks: Stretch marks or striae on the skin are the lines (red or white) that can form because of excessive stretching and the rupture of elastic fibers. Extra bones can stretch your skin, causing marks to appear. To reduce the development of stretch marks, keep your skin moisturized. With time, red marks will turn to white.

Purple spots on the legs: Extra bones in your legs and hips can make it hard to have good circulation in your legs. Consequently, sometimes small blood vessels burst, causing blood to pool under the skin in dark, itchy patches.

NEXT STEPS

Take care of your skin: Use gentle daily soaps for eczema and dry skin and limit how much you use. Take care when bathing by bathing quickly in cold to warm (not hot) water, once per day. Avoid using abrasive sponges, scrubbers, or loofahs.

If you have seborrheic dermatitis, use soaps with salicylic acid or over the counter 1% hydrocortisone products on lesions. Use shampoos to help manage dandruff. Ingredients to look for: pyrithione zinc, ketoconazole, or salicylic acid. Use twice per week and use normal shampoo on other days. If this is not enough, consult a dermatologist.

If you are pregnant or treating a serious condition, consult a dermatologist before using any of the above.

Avoid excessive consumption of spicy, sugary, and inflammatory foods and alcohol. Work to manage stress levels.

Keep skin folds dry: Use powders such as Gold Bond or cornstarch, and apply using a backscratcher, hemostat scissors, paintbrushes, or make-up brushes.

Applying products when you have FOP: Use applicators with long handles. Some have joints that bend at different angles. Applicator heads include sponges, foam rollers and massage balls. Silicone scrubbers are gentle and easy to sterilize.

Inspect your own skin when you have FOP: Check your skin at least once per week, both in visible and not-so-visible areas. Use a full-length mirror, a mirror attached to handle, or a mirror with lights.

Protection from the sun: Apply sunscreens and use protective gear, such as wheelchair umbrellas, SPF clothing, hats, and/or polarized sunglasses.

Reduce the risk of pressure sores: Prop your legs up by using positioning aids. Use pillows, cushions, a foam mattress topper, and air cushions, and change positions frequently. Wear compression socks to avoid thrombosis. Move, if possible, to prevent ulcers. Consult a vascular specialist.

We would like to thank Dr. Patricia Delai for her dedication to the FOP community and for sharing her expertise to make this resource possible.