By Ellen Whitton
Once again, I represented the CSRF at the American Diabetes Association’s Diabetes Expo in Seattle, ably assisted by Lisa Bonner and her fiance Bob. Much of our work involved explaining Cushing’s to people who had never heard of it, as well as hearing about patients’ experiences. The Diabetes Expo is a bit different from other exhibits the CSRF participates in, as this conference is for patients with diabetes rather than physicians. This gives the CSRF an opportunity to talk with diabetics who may actually have Cushing’s. The Diabetes Expo is held in different locations through out the US. Upcoming Expo’s are June 26 in San Antonio, TX; October 9 in Minneapolis, and November 6 in Pittsburgh (http://www.diabetes.org/community-events/). If you live locally and are interested in representing the CSRF at one of these, please contact me. I feel it is critical that we reach this high risk population.
One story really struck me. A woman told me she was being treated with Prednisone for severe asthma. Her face appeared bloated, she had fatty deposits across her shoulders, and said that she was bruising easily. Although I am not a doctor, the amount of Prednisone she told me she was taking sounded very high, so I advised her to go to the “Ask The Expert” booth and talk to an endocrinologist.
This got me thinking that at CSRF, we tend to focus on endogenous Cushing’s, probably because that is what most of us have experienced. However, exogenous Cushing’s due to prescribed steroids is a major cause of Cushing’s syndrome, and an area where we can raise awareness. I spoke with someone from the Arthritis Foundation, who was interested in obtaining information for arthritis patients who are on steroid therapy.
On the stage in front of our booth, a woman was promoting bariatric surgery for diabetics. I joined the audience and when it came time for questions, asked if she’d been evaluated by an endocrinologist before her surgery. She had not. This raises another issue – how many people with undiagnosed Cushing’s, unable to lose weight, have unnecessary and potentially dangerous bariatric surgery?
I made a helpful contact with the booth next door, a clinic serving Seattle’s large East Asian population. We talked about contributing CSRF material to their diabetes support group, and the possibility of translating some CSRF literature into several Asian languages. It would be great to get some of our literature translated into Spanish, too.
I came away with lots of exciting ideas. But I was also reminded that what people often need is someone who will listen to them. When we reach out to others, we help not only by speaking but by listening. To quote writer Dr. Abraham Verghese, “What treatment…is administered by ear?…Words of comfort.”