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living with a chronic medical condition is challenging for the best of people. but acromegaly can offer its own, unique set of challenges that can be unpredictable. following years of pain and struggle, many people with acromegaly have now come to terms with their diagnosis. however, despite finding a level of acceptance of their condition, these individuals are often still very much in need of coping mechanisms and ongoing support. after all, just because you understand and accept that acromegaly isn’t going anywhere, doesn’t mean you don’t still experience symptoms.
dan, one of over 2,000 canadians diagnosed with acromegaly, is still going strong after 12 years. following two surgical procedures and radiotherapy, dan slowly came to terms with his new reality and has experienced many ups and downs: “when i was diagnosed with acromegaly, i could barely pronounce the name. there was so much confusion at first – from myself and my healthcare providers. a lot has changed since then.”
perhaps the biggest barrier that people with acromegaly have to overcome is adjusting to changes in their physical appearance, such as an altered face shape or jaw overbite. “when i first saw my endocrinologist, she asked: ‘have your hands and feet always been this big?’,” shared dan “she explained that the benign tumour in my pituitary gland was affecting my soft tissue, joints, and internal organs, and that if this had happened before puberty, it would be known as ‘gigantism’.”
dan also experienced considerable, chronic pain, which led to a drastic reduction in physical activity. when he does exercise, his muscle tissue grows at an incredibly rapid rate, further adding to his visible, physical differences. as a former athlete and coach, dan has struggled to adjust his lifestyle according to his health needs.