From J D Faccinetti, co-founder – It is often said that once you know people with acromegaly, you will see it more often. It makes you wonder how apt the definition of “rare” is for this disease. A well-respected industry professional once told me that for every diagnosed case of acromegaly, there might be three others that go undiagnosed or misdiagnosed. I can’t verify that, but it sounds about right. Once you know it, you see it all over the place. And as you recognize its unmistakable features, you are often left with the dilemma: should you say something whenever you suspect someone could have the condition. We’ve written extensively about these scenarios, which you can read here.
I was recently in Ireland for a pituitary conference and took a few days to see the countryside. My PWN partner, Dr. Lewis Blevins, wrote this excellent book about his travels in Ireland called Tea in Connemara. Connemara is a region in the west of Ireland that is magnificent in its history and natural beauty, not to mention the best pubs and Irish music in the lot of Ireland. So, Connemara was one of the regions on our list, not in small part due to Dr. Blevins’s descriptions and suggestions.
On our way to the Kylemore Abbey, we stopped at a café in the Connemara Heritage and Historic Center for a cup of tea.
This is Oksana with me in this photo; she’s from Ukraine. She has been in Ireland for a few years with her daughter and working at the Heritage Center. After I noticed her behind the counter and I asked her if she was aware of the disease. She said she was. I saw her eyes filling with tears and, after a few seconds, a smile to go with the tears. She moved to my side of the counter and gave me a big hug. I was the first person with acromegaly she had ever met. She had been so worried about her condition and did not know much about it beyond the information she had from her doctor. She is seeing a specialist, finally controlling IGF-1, and facing more surgery, she told me. We had a nice chat; I told her about PWN and the resources in Ireland and the US for pituitary patients.
I’m glad I said something.
If you see someone that you think could have acromegaly, please say something. They might not know.
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