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Paul's story: From mild rosacea to a rare neurovascular disease

05/29/2018

Paul HolsteinMore than rosacea

Paul Holstein had always suffered from mild rosacea, causing redness to spread across his face. But when he turned fifty, his flare ups became much more violent and severe.

“It was burning from the inside out,” Holstein said. “It was a very uncomfortable, intense pain and my face almost looked disturbing.”

His quality of life plummeted as he had to take more and more time off as an executive at Walgreens, and he began to withdraw from social situations to avoid embarrassment. His dermatologist was puzzled when multiple courses of steroids provided Holstein no relief, and when tests for other diseases like lupus came back negative.

“One day he came in and told me that I need to go to Tufts Medical Center to see Dr. Rosmarin,” Holstein said. “And within the first five minutes of my appointment with him, I had a diagnosis.”

A medical mystery is solved

Holstein was diagnosed with erythromelalgia, a rare and debilitating neurovascular condition that causes intense redness and burning pain. Typically it affects the hands and feet — only a few cases of facial erythromelalgia have been reported.

“My visits with him simply changed my life,” Holstein said. “None of the doctors I’ve seen had ever even heard of erythromelalgia, and Dr. Rosmarin knew I had it the second he looked at me.”

David Rosmarin, MD is a dermatologist at Tufts Medical Center.

This condition can’t be cured, but it can be improved through the right medications. With each new medication regimen Dr. Rosmarin prescribed, Holstein’s flare ups became more manageable.

“Unfortunately there are knowledge gaps in the treatment of erythromelalgia because it’s so rare,” David Rosmarin, MD, said. “The medicines take a while to work so there’s a lot of uncertainty.”

Holstein is now on a regimen that works for him and is seeing a neurologist Dr. Rosmarin referred him to in order to find the cause of his condition. He credits Dr. Rosmarin for making his life as normal as it can be with a debilitating condition like erythromelalgia.

“He was so sympathetic to what I was going through, and he would not give up until I started feeling better,” Holstein said. “When one plan didn’t work out, he had another lined up.”

A strong doctor-patient relationship

Holstein said Dr. Rosmarin is unlike any other doctor he’s ever had – from his frequent check-up calls to greeting Holstein by name when they unexpectedly run into each other in the hospital, Dr. Rosmarin stands out because of his deep dedication and empathy.

“It’s a totally different doctor-patient relationship,” Holstein said. “If I ever meet someone else with this condition, I would have them fly up to Tufts on the 13th floor to see my hero.”

And it’s not just Holstein who values their unique doctor-patient relationship. Dr. Rosmarin considers it crucial to form a strong alliance with his patients and to work together towards a common goal.

“I always say that we treat people – not diseases,” he said. “And I think that’s something we value here at Tufts Medical Center.”