You may remember Jon Danzig from England, who wrote the article, "Acromegaly: My DIY diagnosis." I remember finding that article online back in 2007 and immediately identifying with the frustration of missed diagnosis, and at the same time I was filled with excitement to see that Jon was working to get the word out about the disease.
I've since emailed with Jon and had the opportunity to get to know him better. I'm pleased to point out that he has a new article up at the Testosterone Deficiency Centre's website, entitled, "When doctors are wrong." The title refers to his misdiagnosis as described in his previous article, but it also refers to statements made by a London pituitary surgeon who claimed in a letter to Jon, "for the most part acromegaly is relatively symptom free..." I'd like to introduce that surgeon to all the acromegaly friends I have met online, and have him tell us to our face that acromegaly is symptom free! That statement could have cost Jon his insurance coverage, and it has cost Jon his relationship with a pituitary charity that he formerly raised funds for.
It's a very personal and emotional article, and absolutely worth the read. You should check it out!
Jon, thank you for being so open and honest about your experience with acromegaly, and thanks for raising awareness of the disease so that others may be properly diagnosed earlier!
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2 comments:
Hi E,
I can't tell you how pleased I am that you're sharing "the word of Jon" with others! I may be new to Acromegaly, but I have dealt with a very similar case in my life and I understand how hurtful something like this is. Jon usually injects his stories with a bit of humor, but there's not one funny thing about his case. I support the man in this and certainly hope to see a victory for him!
Tina
It's great that Jon has such a positive outlook after all that he's been through. It amazes me how little my endocrinologists seem to know about this disease sometimes. I've had to be very proactive about my care since developing Acromegaly. Follow your gut instincts, do your research, don't give up.
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