Finding a diagnosis and treatment for severe blistering

becky strong's story

 
Video narrated by Becky Strong – Michigan

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When I first started getting water blisters in my mouth, they would go away and come back so I thought they were canker sores. But soon I started developing blisters on my skin and they too would go away and come back, and eventually they turned into sores. That was when I knew something was wrong, but didn’t know what. At my worst, I had no surface of my mouth and oral pharynx untouched by blisters or sores. I also had problems with other mucus membranes like my nose; I was getting painfully sore bloody noses all the time. It felt like I burned myself and I thought I was dying.

It took 17 months and multiple visits with more than five health care providers to receive a diagnosis. During that time, I went through extensive tests and treatments, including a colonoscopy to test for Crohn’s disease. I was eventually diagnosed with pemphigus vulgaris--an autoimmune disease that causes my body to think my skin cells are foreign and attack them, creating blisters.

My diagnosis was made after an oral biopsy and I was told I needed to see a dermatologist, so I scheduled a visit with Dr. Andrzej Dlugosz. He gave me the most complete physical exam that I've ever had. He was very kind and gentle, and took his time answering all my questions. I was feeling overwhelmed and he understood that. It was amazing to see a doctor who understood what I was going through. He exhibited such confidence that I knew that I was going to be okay through the whole process, and it relieved a lot of my stress knowing that I was in such good hands.

He worked with me to develop a treatment plan and now three years later I am maintaining remission with just some occasional spot treatments. Dr. Dlugosz is an important part of my life because pemphigus vulgaris doesn’t just affect me, it affects my whole family. He knows the patient’s family is a patient too.

The Dermatologist's perspective

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Most patients are concerned when I first tell them that we do not have cures for these autoimmune disorders, but they are relieved to learn that we can almost always find an effective treatment that will clear up their disease, in coordination with physicians in other specialties when other organs are involved. This can be a challenging time for patients and their families, so it’s important to provide reassurance and explain that it should just be a matter of time before things are back to normal.

– Andrzej Dlugosz, MD, FAAD
Department of Dermatology, University of Michigan

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