After having had Cushing’s, we all see people who we think might have Cushing’s. Some of these people might be friends or family, but some of them are strangers that we see in public. Having been through Cushing’s, most of us really want to say something to the person to save them from the agony many have endured. But, most find it difficult to approach a stranger and talk about Cushing’s. During the panel discussions at the CSRF Atlanta Cushing’s Patient Education Day, March 1, 2014, John Gulielmetti asked the panel about the subject of how to approach strangers. The panel consisted of Dr. Jared DeFife, Clinical Psychologist, Emory Univ., Dr. Mary Lee Vance, Endocrinologist, Univ. of Virginia, Dr. Nelson Oyesiku, Neurosurgeon, Emory Univ., Dr. Adreiana Ioachimescu, Endocrinologist, Emory Univ., Louise Pace, Ellen Whitton and Karen Campbell from the CSRF.
Dr. DeFife – I think what you do is tell your own story. It depends on the relationship.
Louise – What I do is I carry a CSRF brochure or business card in my purse. After having Cushing’s, you know that look. It’s not just the weight; it’s the big round face, the skinny arms and legs, the bruising and the hair. I always try to say something. I wish someone had come up to me 20 years ago and asked if I had a problem. What I do is ask the person they are with, not the person I think has Cushing’s. I always first ask if they are taking steroids, because that’s the biggest cause of Cushing’s symptoms. If they aren’t taking steroids, I ask if they are feeling well. When I get an answer that the person in question is not feeling well, I give them the brochure and tell them that they should talk to the doctor about it. I don’t really care what their reaction is since I will never see these people again and by saying something, I could save someone great aggravation and perhaps their life. I think over the past 20 years I’ve diagnosed about 12 that I know of. One time at an exhibit, the person in the booth next to me said she thought her sister had Cushing’s. She called me back and told me that her sister did indeed have Cushing’s. So, you have to say something.
Patient – I think I have a job now. If the situation is appropriate, I speak up now, whereas before I would have never done so. It’s because of what Louise and the CSRF has done for us that we have to speak up. If I can save just one person from having to go through what I did and save them for example, the experiences of having my parents in tears because they didn’t know what was wrong with me, then I have to say something. That should be our call to action.
Louise – What bothers me immensely is the obesity issue in this country. You see people that are absolutely huge. The thing is that if a Cushing’s patient goes into the doctor and they are getting worse every time, they treat the high blood pressure, the diabetes, etc., but they don’t think about an endocrine problem. They immediately think obesity. But, it’s not just the overweight issues. I have friends that are heavy, but they are healthy, relatively speaking. With Cushing’s, there are many other problems. I always ask people if they are sleeping as that’s something you can’t tell by looking at someone.
Dr. DeFife – It’s one thing to educate, but I do worry about invading other people’s lives and telling them I think you have this, without an invitation. But, Louise, you’ve usually asked for example, is everything OK with your wife, and he has responded. So there is some type of a relationship. But, I would be very hesitant to go to a car dealer and go to a co-worker and say I think your colleague has Cushing’s. There has to be some kind of caring relationship, like is everything OK.
Ellen – I was in a restaurant and I have a birth mark on my shoulder. A man came up to me and asked if I’d ever had that birth mark looked at. I replied that I had and it wasn’t anything to be concerned about. I was kind of startled, but then I thought about it, and realized that it was actually kind of nice for someone to do that. He didn’t have to do that. Maybe it’s my experience of dealing with a rare disease, but I wasn’t offended.
Dr. Vance – I want to tell you a true story about an endocrine colleague of mine, who does mostly pituitary. He and his family were vacationing and they stopped at an interstate rest stop. He spotted a man who looked like he had agromegly, such as the big jaw and hands. He followed him into the restroom, told him he was an endocrinologist and asked if he had been tested for agromegly. The man got very upset, telling him that he’d already been treated. So, it’s a double edged sword. There was also a cultural difference which can play a role in how people respond to situations. I have at times approached someone, but it is a difficult thing to do.
Dr. Oyesiku – I think rare diseases, being what they are, are hard to find, difficult to recognize and easy to miss. The only way you find out about them is from someone who is already clued in to the condition, like yourselves or ourselves on this panel. We are all our brother’s keeper, so to the extent that you can help someone avoid the pitfalls of your experience such as delayed diagnosis, falling into the wrong hands, etc., telling someone is a service that you do for your fellow man. If I was driving a car and it was headed for a ditch, I’d want someone to tell me. So, I will approach someone. If they get offended, I just say, I’m sorry, I was trying to help.
Patient – I have a cousin who I thought had it and I did tell her. For a stranger, well I’d call President Obama if I thought he had it, because it’s so horrible that I feel that I’d be doing a disservice if I didn’t say anything. You can’t have had Cushing’s and see someone that you think has it and not say anything. Maybe I do that by telling my story, but I have to tell them some way. Patient – I’m not really shy about going up to people. But I have this friend that I wanted to tell about Cushing’s, so I said, “Can I make an observation?” and if they say yes, I’ll make my observation. If they say no, I’ll say OK and figure out a way to let them know that I’ve had Cushing’s and discuss it. I did this with one of my friends and it turns out that she did have it, but I was very subtle in my approach.
Louise – But you need to ask them if they are taking steroids.
Dr. Vance – Or getting steroid injections in their back, spine or another joint.
In summary, find a way to approach strangers. Always carry CSRF business cards or brochures with you. These are available on our website under Spread Awareness. Try to form some type of “relationship”, maybe by working a Cushing’s symptom into the conversation and telling your own story. It is also advisable to ask about steroid use as many patients taking steroids are not informed of the side effects.