Scleroderma Month: In Memory of a Friend and Dietitian

Posted by [email protected] on June 1, 2016 at 4:10 PM

 

                                                                                 Scleroderma: Musing about A Friend and Dietitian

In the summer of 2003, I lost one of my best friends to a rare, unknown, incurable disease called scleroderma. Karen and I had met at college where we were both working on our Bachelors of Science degree in nutrition with the goal of becoming future dietitians. We formed an instant bond as we were both Jamaicans and could understand each other’s struggles and pain. We often studied together and found ourselves on occasions spending many sleepless nights getting ready for our microbiology, chemistry or nutritional biochemistry exams. With perseverance and determination, we survived those years at Georgia State University, and Karen went on to become a wonderful renal dietitian until scleroderma made it impossible for her to live with us any longer…

In between the beginning of our friendship in the 1994, and the end of her life in 2003, I grew to know and love Karen’s husband and family. So, I never missed a family gathering, birthday or graduation, or any other event. So, I felt privileged to spend the last moments of her life with her and her family. After her death, grieving was difficult as I often questioned God about why her, but with prayers and time, God came as he always does and forgave me for being mad at him and healed the broken places of my heart. I believe that he has done the same for her husband and her family. Today, thirteen years later, I know that God’s forgiveness and love as kept me as well as all those who loved and cared about Karen. I rest in confidence that one day, I will be reunited with Karen, as she professed faith in Christ and as a Christ-follower, I know that we will meet again.

But what is scleroderma, and why should we who remain after Karen’s death work to raise awareness about this disease? I am glad you asked, since June is National Scleroderma Awareness month. According to the Scleroderma Foundation (2016), Scleroderma, or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases. The word “scleroderma” comes from two Greek words: “sclera” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. The hardened skin was what one would notice about Karen after seeing her infectious smile. Yet, she never allowed scleroderma stop her from pursuing her dreams of marriage, a career, and being not only a wonderful wife, but a brilliant and caring renal dietitian.

In 2016, it is estimated that about 300,000 Americans have scleroderma, but since diagnosis is difficult, and symptoms are similar to other autoimmune diseases many may be misdiagnosed or undiagnosed. There are two major classifications of scleroderma: localized scleroderma and systemic sclerosis (SSc). The changes, which occur in localized scleroderma, are usually found in only a few places on the skin or muscles, and rarely spread elsewhere. The changes occurring in systemic scleroderma may affect the connective tissue in many parts of the body. Systemic scleroderma can involve the skin, esophagus, gastrointestinal tract (stomach and bowels), lungs, kidneys, heart and other internal organs. It can also affect blood vessels, muscles and joints. My friend Karen had systematic scleroderma and struggled with a myriad of symptoms and complications from the disease.

This month, let’s talk about this condition. Do you know anyone with this condition? Are you angry at God for giving you this condition? Have you, like me lost a friend, spouse, or relative to this condition? Share you scleroderma story and as I reflect, and remember my friend, let talk and encourage those who might have the disease to get tested and treated so that they can have a good quality of life.

In Memory of a Great Friend and Dietitian!

Healthy regards,

Dr. Meg

 

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1 Comment

Reply Rohan
6:28 PM on June 1, 2016 
Such a lovely piece Megan and so wonderful that you were a part of Karen's life! She is truly missed and I will forever keep her in my heart. She was a champion and fighter!