Scleroderma: An Auto-Immune Condition Affecting African Americans

By: Asantewaa Gail Harris

Asantewaa Gail Harris

Scleroderma: An Auto-immune Condition Affecting African Americans

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:

According to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, scleroderma is “…derived from Greek words “sklerosis” meaning harness and “derma” meaning 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.

Symptoms of Scleroderma:

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

  • 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.

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

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)

 

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).

Why Scleroderma is so Important to Me:

My 33 year old daughter was diagnosed with systemic scleroderma in New York City in April of 2013. After five hospitalizations, she is currently stabilizing while on a diet of liquids and soft foods. She has what is known as GERD, or gastroesophageal reflux disease (GERD), which is a chronic digestive disease. Her initial presenting symptoms were frequent vomiting and weight loss. There have been many trips to emergency rooms, doctor’s visits and clinical follow-ups. Nothing prepared us for the challenges that scleroderma can bring to the patient, the family or a health care system that has limited knowledge about this disease.

On March 22, 2014, my two daughters and I attended the African American Patient Education Forum in Philadelphia, PA. With nearly 80 attendees several researchers and physicians presented information on symptoms, treatment and current research on Scleroderma. This event was attended by patients, their care-givers and family members from the Delaware Valley regions of Pennsylvania, New Jersey, Delaware and Maryland. And there were also folk who traveled from Louisiana, Missouri, and the Tri-State Scleroderma Support Group members of New York. The forum’s only African American presenter gave scholarly examples of cultural and folk traditions relating to health.

The mother of award winning performer and TV host Dana Owens, known as Queen Latifah, has scleroderma, and Queen Latifah was interviewed in the May 1st cover story of People Magazine about her mother, Rita Owens, her scleroderma diagnosis and her care needs.

The National Scleroderma Foundation hosted its national conference July 25-27, 2014 in Anaheim, CA. Again the absence of African American medical or research professionals was quite glaring for me and my family. We sat through an Awards Dinner that included honoring Queen Latifah, her mother Rita Owens, and two volunteer support co-leaders from Rochester, NY. with their Messenger of Hope Award.

Key Autoimmune Disease Related Events

  • On September 20th, I participated in the 6th Annual Black Women’s Wellness Day http://www.blackwomenswellnessday.org at the Alliant Energy Center in Madison, Wisconsin,
  • New York City’s Jacob Javits Center will be gathering thousands of women and girls and those who love them for the 10th Annual Circle of Sisters Expo on October 4th & 5th, and
  • On October 11, 2014, Rosa Johnson and Marilyn Sibley and the Rochester Scleroderma Support Group will be holding an African American Health Awareness Day at the Marriott Hotel in Rochester, NY https://www.facebook.com/events/269059669966013/?ref=5

Resources related to Scleroderma and Other Autoimmune Diseases:

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

National Scleroderma Foundation – www.scleroderma.orghttp://RochesterEd.SclerodermaTriState.org/ http://RochesterEd.SclerodermaTriState.org/ http://RochesterEd.SclerodermaTriState.org/ http://RochesterEd.SclerodermaTriState.org/ http://RochesterEd.SclerodermaTriState.org/

Sister Health & Wellness Collective – www.shwcnyc.org

Columbia Community Partnership for Health http://irvinginstitute.columbia.edu/2012/resources/community_engage.html

Black Women’s Wellness Day www.blackwomenswellnessday.org

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