african american woman at doctor

More than five years have passed since the death of my paternal grandmother. She was charismatic, comedic and warm-loving. Grandma was a force to be reckoned with. She would take in neighborhood children as her own and, as the family matriarch, she kept us all together, and could whip up a meal that’ll leave you begging for more! Regardless, of what time of day you visited, she was always in good spirits and always had a hot plate to send you home with. Grandma had an insatiable appetite for life, never missed a family event or Sunday morning church service. But that’s not all! She also had the snap back and quick wit of a 20 something year old. Get 'slick at the mouth' and she would quickly put you back in place before you thought about taking your next breath. As you can see, in my eyes she was more than just my grandmother---she was a role model.

Imagine my disbelief and shock when I received the phone call, “It doesn’t look good. The doctors called 'code blue' on Grandma."

Code blue=cardiac arrest.

She was healthy, she was happy, she was vivacious at all times but in reality no one knew how badly she was ill. Grandma suffered in silence for years, and eventually passed away from a rare disease known as scleroderma.  Also known as systematic sclerosis, scleroderma is an ongoing, progressive, autoimmune disease which attacks the connective tissues of the body. The meaning behind scleroderma is “hardening” of the skin and the effects and severity of the disease vary from each person. Additionally, auto immune diseases cause the immune system to counteract, subsequently producing more collagen than necessary.

According to the Scleroderma Foundation there are two types of scleroderma, localized and systematic. Localized Scleroderma is a minor form of the disease, and found to be more prevalent in children. Its effect is typically limited to certain areas of the skin and muscles. Systematic Scleroderma, also known as systematic sclerosis, is more prevalent in adults and affects larger areas of the skin. The latter form of scleroderma causes inflammation of the joints, tightened facial skin, pigment discoloration, dry skin and skin thickness. Often times it leads to the attack on internal organs such as the heart, kidneys, lungs, esophagus and gastric tract. Organs begin to work less effectively becoming “hard and fibrous” --- which can, of course, have devastating, potentially fatal effects.

Scleroderma has not gained widespread attention as other diseases affecting women. I'd wager that most of you reading this haven't heard of this incurable, lifetime illness. Although rare, it is more common in women than men at a ratio of 4:1. Studies have found scleroderma to be more prevalent among African Americans than any other race.  This disease is often misdiagnosed or overlooked because it has similar traits to the more common, and treatable, rheumatoid arthritis.

Unfortunately, there are many unanswered questions regarding scleroderma, including its cause. Many suggest, although not hereditary, there is a chromosome factor relating to family members which may expose them to a higher risk of developing other autoimmune system diseases such as rheumatoid arthritis, lupus or thyroid disease. This typically occurs at a greater level for those of African American and Native American descent.

Additionally, although any age group can develop scleroderma, the onset of the disease begins on a more frequent basis between the ages of 25-55. Studies show it is more apparent in African American women beginning at an earlier stage. Although there are no known cures, individualized treatment options are available to manage and offset symptoms. As with most diseases, early detection is always best. Early indicators of scleroderma may include a change in your fingers becoming rigid, swollen, discolored and sensitive to coldness. In order to determine a diagnosis, one should meet with a dermatologist or rheumatologist and may require a skin biopsy, blood work; along with other specified testing. Unfortunately, many African American women, like my grandmother, have an increasingly higher risk of developing scleroderma in the more life threatening state. Although she may have experienced the previously mentioned symptoms on a daily basis for years, the disease took its toll by slowly but surely shutting down various organs, eventually leading to her death.

Last year, the Scleroderma Research and Awareness Act was resubmitted in the House of Representatives in hopes of receiving more financial support from the government. Though the act is not likely to pass, it's encouraging to know that more people are thinking about the disease and ways to prevent and treat it. On a personal note, I have made it my crusade to let as many people as possible know about this scleroderma, as a way to honor my own lost loved one. If even one person is able to benefit from my story by catching this disease at an early stage, my Grandma’s suffering was not in vain.

Dontaira Terrell is a Florida A&M University graduate and freelance journalist.