From the desk of J D Faccinetti, co-founder PWN – You’re sitting at an airport. Suddenly someone sits next to you. You look. Then look again. The features. The hands. “Yes, I think this person has acromegaly,” you say to yourself. “Or, maybe not. Hmm, not sure. But it sure looks like it. I should know, I have it! Once you know about acromegaly you can’t miss it, right?” Hmm, what to do? Do you say something? Of course, you do! Or do you? But what? How do you approach it? How do you walk up to a complete stranger and tell them you think they have a disease – maybe you should say “condition”, that sounds a bit better, you say to yourself – …and by the way, who the hell are you to get involved? What makes you an expert? Are you a Doctor? Are you nuts? This may very well be the response you get, but you can’t just leave it alone! How do you actually start this conversation? WHAT DO YOU SAY? HOW DO YOU SAY IT? All this goes through your head in a split second. But in the end, you just can’t let this person disappear. What if she/he doesn’t know? How much longer will it be until someone else notices? Will they suffer for 10, or worse yet, 25 years wondering what’s wrong with them?
This scenario is not that uncommon. It actually happens quite frequently.
In a recent conversation with my friend and colleague Jill Sisco we discussed doing an article about precisely this scenario: How do you tell someone you think they could have acromegaly?
We invite everyone to give us their thoughts and answer the question. To play, click on the link at the end of the article.
Dr. Lewis Blevins’s experience: Dr. Blevins told me that on one occasion he run into a gentleman at the San Francisco airport. This man had very evident signs of acromegaly. Without hesitation, he approached him, introduced himself, handed him his card, briefly explained his reasoning and told him to get in touch with his office. The gentleman was noticeably shocked and annoyed by Dr. Blevins and he dismissed his advice, at least that is what Dr. Blevins thought. Weeks later when his wife, who had witnessed the exchange, called Dr. Blevins and profusely thanked him. Her husband had gone to get checked and was diagnosed with a growth hormone-producing pituitary tumor, which was successfully treated. This gentleman is today in total remission.
Jill Sisco, president Acromegaly Community Support Group writes: “This scenario has happened to me actually several times. I always ask myself, “Don’t I wish that someone had recognized this condition sooner in my own case?” After all, microadenomas have a much higher remission rate. When this happens I always say something. I feel I would rather look like a fool trying to help than to let someone pass that could have this condition undiagnosed. First, let me mention, I never say to anyone “You clearly look like you have acromegaly”, many patients find some of the older photographs online offensive and some patients go much longer because they just don’t look like they have acromegaly. The older photographs online certainly leave people with a stigma regarding this condition, a stigma that is unfair. No one asks to have a rare condition that affects every aspect of their lives. I start by asking simple questions such as, “Has your shoe size increased or your ring size over the past few years?” If the answer is yes, I ask other questions such as, “Do you think you might have some pituitary issues, such as swelling, sweating, joint aches, and headaches?” If this answer is also yes, I then ask them, “Have you noticed a change in your appearance?” When asking this I ask if they have noticed their facial features coarsening. With all of this, if they say yes, I tell them they should consider seeing a good endocrinologist. I explain the great group that I belong to and help run full of patients with a rare condition. I then go on to tell them, some of my stories and show them the before diagnosis and after treatment photos. I always do this because even if they do have this condition you want to leave them with the hope that with proper treatment, life does improve.”
Deanna Badiuk – Founder, Canadian National Acromegaly Support Group writes: – “This has been a very hard subject for me. I was able to start a support group and bring people together to learn how to take care of themselves better, to help them share their problems, and surround them by people that understand and support each other. But I still couldn’t tell a person that I didn’t know, or didn’t really know well, that they might have acromegaly. This has truly bothered me, and I needed to figure out why? I knew that approaching a complete stranger to talk about acromegaly was the easy part. The hardest part was I knew that I would change their life forever. I like to help and comfort people, not rock their world to the core, but I realized that I could, and would be saving their lives, that they could actually live longer and enjoy life longer and might be grateful that someone said something to help them get diagnosed and treated.
Here’s what I would do: “I would strike up a conversation just by saying hi. Then move forward with more conversation – believe it or not people enjoy casual conversations with strangers – then slowly work my way to talk about my rare disease. People are usually very interested as they have never heard of this rare disease or know someone that has it. Maybe talk about signs and symptoms, and that I have observed some signs of acromegaly. I would tell them that it is a really easy blood test that will confirm this diagnosis. It costs about $100.00 but it would be worth it. I would give them my business card and tell them to google the disease to understand the sign and symptoms and to please reach out anytime. We all have the power to do this, we just need to believe in ourselves.”
J D’s experience: As I was saying, I run into this scenario twice. It was so evident but I didn’t know what to do or how to approach it. My hesitation was not knowing how to verbalize it clearly. Maybe say, “I was recently diagnosed with a disease called acromegaly and you look like you have some of the physical characteristics of the condition. This is a tough disease but it’s very manageable once you are treated, and sometimes you can be totally cured. Early detection is key. And so many people go undetected by their physicians. Here’s a number you can call.” I hesitated and hesitated, and hesitated. Every time I decided to approach him, my heart would start pounding and a rush of what felt like gallons of adrenaline would go through my body. Shame on me, I thought, and in the end, I did nothing. Needless to say, I could not get this person out of my head for months. I still think about it and want to kick myself for not saying anything.
The second time was at an airport frequent flyer lounge. As I gathered enough mustard to go over and talk to him the same feelings of insecurity and stress came over me and hesitated for a few minutes. “I’ll go get a cup of coffee, gather some courage then talk to him”, I thought. When I returned, he had gone. Couldn’t find him.
In sharp contrast, sometime later my son mentioned he had met someone whose features looked eerily similar to mine and without skipping a beat he told him to go see a Doctor. This person was diagnosed immediately, had very successful surgery, and today is in total remission. Not a peep of the tumor.
So, my advice: don’t walk away. Don’t over think it. Say something!
Now we want to hear from you! Did you ever have a similar situation? What did you do? What would you do if faced with this scenario?
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