My Story - Bullous Pemphigoid

 October 17, 2015, I was a newly retired Lieutenant Colonel, United States Army, Medical Service, who was finally going to enjoy time with family after a simple surgical procedure at Walter Reed National Military Medical Center, Maryland. However, within twenty-four hours of the procedure hives and then blisters were breaking out on my back and chest. My skin itched horribly and I was in severe pain. It was the beginning of a nightmare that I never expected. 

By December 2015, a small army of medical staffs at Stafford Hospital, Virginia, Fort Belvoir Community Hospital, Virginia, Walter Reed National Medical Center, Maryland, and the Mayo Clinic, New York, were all collaborating on my medical care while conducting a large array of medical tests on me. By February 2016, I was diagnosed with Bullous Pemphigoid (BP). My treatment consisted of steroids, anti biotics, pain medications, mouth rises while my arms and legs were wrapped in sterile dressings after topical steroids were applied. I was scared, depressed, and felt very isolated. 

I contacted the International Pemphigus/Pemphigoid Foundation (IPPF) and spoke with Marc Yale who was a Peer Health Coach at the time, and the first thing that he said to me was “you’re not alone, and you now have a community of people who care about you.” Through patient services like Peer Health Coaching, support groups, educational webinars, an amazing online resource library, Pem Press, research updates, and the annual conference. I learned a lot about BP and I made a lot of friends.

It's been about 2.5 years and I've learned how to manage my condition, advocate for my care and yes, have a life - and I am doing well. I am grateful to IPPF, friends, family, my faith. I've always remembered what Marc first said to me, "you're not alone and people care about you."

Carolyn Fota

Brady's Story

Brady Attar was born in July 2016 in Houston, Texas. After a healthy pregnancy and smooth labor, my husband Chris and I welcomed our dear son into the world. Moments after he arrived, we noticed something was terribly wrong - Brady’s feet were raw, bleeding and missing skin. Brady was carefully bundled and placed in front of us to allow us to kiss his blistered, fragile lips before being rushed to the NICU.

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In the two weeks that followed, Brady underwent biopsies and several tests that would conclude that he had inherited a rare genetic condition - recessive dystrophic epidermolysis bullosa or RDEB. Even in a family full of medical professionals, not a single one of us had ever heard of this rare and horrifying disease.

During the time we spent in the NICU, Brady was a learning opportunity for medical residents and nurses. Normal protocols were put to the test - inserting I.V.s, keeping his temperatures comfortable without any clothing that could pull his skin off. Wound care was immensely tricky. I recall a nurse holding Brady’s bare calf in efforts to stabilize his leg as he was kicking and screaming. Her face turned white when she realized that by holding his leg, the skin that covered the entire backside of his calf had sheared off in seconds.

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We were overwhelmed. Not just by the daily tasks required to keep him safe and well, but also by the effort it took to get the resources we desperately needed. Home health agencies had little to no experience caring for a child with EB, and the fact that Brady was so young made them more hesitant to agree to care for him.

Our private insurance company would not cover wound care supplies that would cost us upwards of $8000 monthly. These bandages would be Brady’s only form of “treatment” and without them, he would not survive. We realized quickly that we weren’t the only people who hadn’t heard of EB, but it’s rarity also meant that our path forward would require constant education that would hopefully lead us to properly care for Brady.

Brady is now almost two years old, and his fierce spirit continues to foster joy and laughter each day. He loves watermelon, goldfish and anything that involves his older brother Leo and dog, Clementine. He works diligently with physical therapy and his caregivers to work around the bandaging that protects his body, simply to do the tasks most people wouldn’t think twice about doing.

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Perhaps most profoundly, Brady is learning to walk on his tender, fragile and often still wounded feet.  Our family keeps high hopes that Brady will be able to do most of the things that “normal” children do. We ache to think of the moments that will cause too much pain to run or even walk.

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Still, we will move forward with continued faith in research and hope that rare diseases like Brady’s will soon not be so rare. With increased awareness and understanding, we believe that Brady will see treatment and hopefully a cure within his lifetime.

-Brady and the “Brady Bunch” (The Attar Family)

 

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