Scleroderma: A Key Health Issue For African Americans

Scleroderma with ribbon

Although you may have heard the term auto-immune condition, or disease, many people aren’t sure what it means. It’s a disease in which the immune system, or body defensive system, for reasons unknown, turns against one’s own body.  Scleroderma is an autoimmune condition that affects African Americans.

Scleroderma:
According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, scleroderma is derived from Greek words sklerosis meaning harness and skin. It is not a single disease, but a symptom of a group of diseases that involve the abnormal growth of connective tissue, which supports the skin and internal organs.In the U.S. where there are an estimated 300,000 cases and women with scleroderma outnumber men about 4:1, African Americans are more frequently diagnosed, and at an earlier age than other racial and ethnic groups (Scleroderma Foundation Research, Education and Support).

There are two main classes of this condition: Localized scleroderma affects only certain parts of the body whereas systemic scleroderma affects the whole body, and currently there is no cure.

Scientists do not know what causes scleroderma, but they are certain that it is not contagious and cannot be transmitted to others. Researchers have found some evidence that certain genes are important hereditary factors, but the environment seems to also play a role. The result is activation of the immune system in a susceptible individual, causing damage to the inner lining of tiny blood vessels and injury to tissues that result in scar tissue formation and the accumulation of excess collagen.

Symptoms of Sclerodermascleroderma - hands

According to the Mayo Clinic, scleroderma’s signs and symptoms vary, depending on which parts of the body is involved:

Swelling or puffiness of the hands:
Swelling is another typical early symptom of scleroderma, and this may be especially noticeable upon waking up in the morning due to muscle inactivity at night. The skin of the fingers may look full and sausage-like, making it difficult to close the hand into a fist. Exercising the fingers and toes can help. Your physician may recommend medications to reduce inflammation. Referral to an occupational therapist at this stage may be helpful for range of motion education.

Skin. Nearly everyone who has scleroderma experiences a hardening and tightening of patches of skin. These patches may be shaped like ovals or straight lines. The number, location and size of the patches vary by type of scleroderma. Skin can appear shiny because it’s so tight, and movement of the affected area may be restricted.

Fingers or toes. One of the earliest signs of scleroderma is an exaggerated response to cold temperatures or emotional distress, which can cause numbness, pain or color changes in the fingers or toes. Called Raynaud’s phenomenon, this condition also occurs in some people who don’t have scleroderma, such as some people with decreased vascular flow in their extremities.

Digestive system. In addition to acid reflux, which can damage the section of esophagus nearest the stomach, some people with scleroderma may also have problems absorbing nutrients if their intestinal muscles aren’t moving food properly through the intestines.

Heart, lungs or kidneys. Rarely, scleroderma can affect the function of the heart, lungs or kidneys, and may even become life-threatening.

Who Makes the Diagnosis of Scleroderma:

Depending on the particular symptoms, a diagnosis may be made by:

A general internist.
A dermatologist (a doctor who specializes in treating diseases of the skin, hair, and nails).
An orthopedist (a doctor who treats bone and joint disorders).
A pulmonologist (a lung specialist).
A rheumatologist (a doctor specializing in treatment of musculoskeletal disorders and rheumatic diseases).

Many individuals with scleroderma have damaged skin from tightening, ulcers, and lack of circulation. It is important to treat our delicate skin with the utmost care, regardless of how it’s changed.

A new awareness is sweeping the nation about damaging chemicals, and consumers are becoming more conscientious of those that are in food, beauty, and household products. When dealing with autoimmune disease, it’s especially important to pay attention to chemical contents. The body is already fighting itself and harmful chemicals do not help the process. Be aware of what you put on your skin to help nourish and preserve it.

If skin has too much collagen (scleroderma causes this), the cells in charge of providing oil and lubrication to the skin have difficulty keeping it moist. The key to keeping skin moist is to create a protective barrier that lasts throughout the day. Doing so begins in the shower. Treat sensitive skin with fragrant-free lotion or soap. When searching for a new soap, make sure they are free of:

parabens
synthetic colors
phthalates
triclosan
sodium lauryl ether sulfate
formaldehyde
toluene
propylene glycol

You can take an active part in treating your scleroderma. Be sure to take your medications as prescribed, keep your physical therapy appointments, and call your doctor if you notice new symptoms.

Take Care of Your Skin

Skin problems. With scleroderma, collagen builds up in the skin. Too much of it can make your skin dry and stiff. To help, you can:

  • Use oil-based creams and lotions after every bath.
  • Use sunscreen.
  • Use a humidifier at home.
  • Avoid hot baths or showers.
  • Avoid strong soaps, cleaners, and chemicals. Wear rubber gloves if you have to use those products.
  • Exercise regularly.

Other Common Auto-immune Conditions Include:

  • Celiac disease – sprue (gluten-sensitive disease of the intestinal tract)
  • Systemic lupus erythematosus
  • Multiple sclerosis
  • Rheumatoid arthritis
  • Sjogren’s syndrome (Venus Williams has this condition)

Suggestions to support your general health post-diagnosis

There are some simple steps you can take to help maintain your general health:

  • Don’t smoke, drink alcohol or caffeine or use recreational drugs.
  • Get sufficient sleep.
  • Try to avoid stress as much as possible. Yoga, meditation and biofeedback may help you manage stress and anxiety.
  • Avoid processed foods, sugar and soda.
  • Echinacea boosts the immune system. Since scleroderma is an auto-immune disease, it is recommended that patients avoid this herb.

There is no cure for scleroderma, but treatments include medication, therapies and surgery all aiming at managing the symptoms.

Resources related to Scleroderma and Other Autoimmune Diseases:

Source: http://www.mayoclinic.org/diseases-conditions/scleroderma/basics/symptoms/con-20021378

American Auto-immune Related Disease Association, Inc www.aarda.org

National Scleroderma Foundation: www.scleroderma.org

Black Women’s Wellness Day www.blackwomenswellnessday.org

 

hope for a cure - scleroderma

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