Nancy Callaway, president of Third Eye Creative Advertising and a former TV news producer, shares her personal story of struggling with the chronic disorder of itching for years and the hope she has in the future of research.
Fourteen years ago my face started itching. It spread to my hands, and my arms and legs. Everywhere I had skin, I itched. It was constant and when it got intense I couldn’t think of anything else. Scratching didn’t help. Lotions, antihistamines, diet changes – all were useless. And after months of appointments with a slew of doctors I realized they had no answers for me.
Six months later the symptoms lessened and some days they disappeared. But they always returned.
Then a year and a half ago, February of 2013, thirteen years after my first big outbreak, the itching came back full-blown and constant. I again made the medical rounds.
Between a neurologist, an oncologist and internist there were lots of guesses, from MS to a brain tumor or vital organ failure. So I had a CT scan, a brain MRI and lots of blood work. Still, nothing.
Then one day I heard a radio report about research being done at the NIH. Dr. Mark Hoon was discussing his search for the cause of chronic itch. I was excited.
Once the report ended I went straight to my computer. To my surprise on the NIH website was an email address for Dr. Hoon. I wrote him. I described my condition, the thirteen-year gap between full blown symptoms and my frustrations with medical visits that didn’t produce answers. And I asked for his help, though I didn’t really expect a response.
But twenty minutes later an email from Dr. Hoon appeared in my inbox. I was astonished. He had actually read my email and written me back. That was the good news. The bad news was he wasn’t seeing patients and there were no clinical trials of any kind at the NIH. He did tell me of the Center for the Study of Itch at Washington University in St. Louis. He suggested I get in touch with Dr. Lynn Cornelius who ran the center. It worked the first time, so I emailed Dr. Cornelius.
Could I come to the clinic she wrote back. And if I could wait a couple of months another specialist would be visiting there and they could evaluate me together.
When the day for the appointment came I had high hopes. Dr. Cornelius and Dr. Martin Steinhoff from UC San Francisco began the exam. For the first time I felt I was truly being heard. We covered a lot of the same territory I had gone over with other doctors. But there was a level of compassion for the pain I was in and a thoughtful effort to unravel its mystery.
At the end of the exam it seemed the treatments available were drugs protocols. I had been down that road. A couple of the drugs I had already tried years ago had such bad side effects I didn’t know what was worse: the itching or the misery from the drugs.
Thanking the doctors for their time I mentioned I had been in Europe for a few weeks and didn’t have a single day of itching while I was there. But the day I got back home the itching was up and running, all over my body again.
Dr. Steinhoff smiled broadly when I told him this. He said he had several patients who reported the same thing. Why would that happen, I asked. He shrugged and said maybe Europe is just cleaner, better food or water. They do care more about the environment there, he allowed. Then I guess I am moving to Europe, I said, I have always dreamed of living in Paris.
But I didn’t pull up stakes and move to Europe and by the end of October the itching was slowing down. And in a couple more weeks I had whole days again without any itching. Now my cycle of mild to terrible symptoms persists. I am still waiting for someone to discover what the trigger is for my itching. My hope comes from knowing the research into chronic itch is broadening and some good minds are finally focusing on this problem that affects millions.
Maybe some day...
Nancy Callaway is the president of Third Eye Creative Advertising. She's also formerly of PBS and ABC News.