Personal Experience with Autoimmune Skin Disease

We can take care of our skin the best we know how, but when an autoimmune skin disease afflicts us, we feel uncertain and sometimes helpless. In 2014, a rare form of autoimmune skin disease was no longer rare or strange to our family.  Many physicians had no name for the disease until a dermatology specialist ,who was humble enough to collaborate the diagnosis with me agreed that my husband had bullous pemphigoid and linear IgA dermatosis. Difficult to pronounce names and difficult to treat. From 2014 until his death this year, my husband battled the disease, which overwhelmingly preoccupied him on a daily basis. Although, he had many good days, he also had many bad days. 

The disease's entry in our life began when large, round, and bright red "angry" looking lesions came out of nowhere and covered my husband's entire body. For days, these lesions would get redder and bigger, and when these pop, my husband's clothes would get stuck to the skin. As he removed his clothing, his skin went with the clothes! It was so painful to watch! The disease was disfiguring in a way. It might have been frightening for people who didn't know what it was. Luckily, he married a nurse and one who loves to care for wounds. Except, I didn't do very much for him because for the most part, he wanted to do things his way. 

I nicknamed the disease "Job's disease". Job in the Bible was afflicted with a skin disease that made people and his own family abandon him because of his appearance. They also feared that Job could spread the disease to them. Fortunately, my husband was not abandoned since we knew full well that autoimmune diseases are not contagious. 

The pain, itching, and discomfort seemed so overwhelming to me as a spectator and one would think that he would be overwhelmed too.  But not him - he never complained or got upset. He kept his optimism and was happy even with one lone lesion that showed improvement. He would often tell me that he was cured when there were no active lesions. Of course, a week or so later, we would see new ones. I often reminded him that there is no cure for autoimmune disease - only medicines to manage and control the symptoms. Although the skin disease was only part of his more complex medical picture, it affected his life in major ways. With a life-long immunosuppressant therapy, he had to avoid crowds for fear of infections. 

Immunosuppressants are medications to slow down the immune system so as not to attack itself. As a result, when bacteria or viruses do get in the body, the immune system is not capable of fighting the infection. So we were always careful around him. We stayed away when we had a cold or cough. 

My husband showed so much courage over the course of his illness (by never complaining or acting the "poor me syndrome"), but I could sense his increasing discomfort as he began to withdraw from family and friends. Although his severe lung and heart disease shortened his life, the autoimmune skin disease played a part in reducing the quality of his life. I could only imagine what he was thinking and feeling during those difficult times in his life because he chose to share about his engineering inventions, renewable energy, and his conviction of a loving God. He also loved to talk about what he thought about every American president or president hopefuls, and the many liberal politicians and Hollywood actors. But rarely about the discomfort he was feeling.    

The moral of my story is that, life is without question, uncertain, and unpredictable. Things that happen to us are sometimes hard. But we don't have to be unhappy and bitter. We can live a life that is fulfilling and meaningful even in the midst of hardships. We can make each day beautiful for us and for those around us by being loving and caring, by being kind and understanding, and by being thoughtful and genuine. 

So I say,

Stay beautiful inside and out.

Love, Dr. Em

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