living with acromegaly: the story of a former canadian athlete
this ottawa resident shares his acromegaly journey
mar 12 2021
3 minute read
dan is a former canadian olympian and politician living with acromegaly.
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this story was created by content works, postmedia’s commercial content division, on behalf of a client.
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’.”
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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.
understandably, acromegaly can take an emotional toll on a person. it’s not uncommon for individuals to feel lonely, embarrassed, isolated, and depressed when suffering from such a chronic, often debilitating, medical condition. many battle with loss of identity, or worry about how acromegaly will affect their relationships, career, and ability to travel or have children. “my day-to-day existence has been a struggle,” dan shares. “i feel so sick sometimes that i just don’t want to go anywhere. it can be really hard at times.”
one of the most important things that someone with acromegaly can do to help them manoeuvre life’s daily hurdles is to build a strong support network around themselves. while family and friends can often provide an important source of acceptance and encouragement, patients who join support groups report feeling a fundamentally unique and irreplaceable level of understanding by connecting with others with similar life experiences. for dan, counselling has been the most impactful aspect of his acromegaly treatment program, helping him manage his emotions better: “counselling has taught me how to help those around me better understand how acromegaly affects me. i’ve found it extremely helpful.”
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those who have lived with acromegaly for years may also find purpose in adopting supportive roles as educators or advocates. in this way, one can encourage others to take control of their bodies, share knowledge of treatment regimens, and give practical advice on how to keep detailed medical records of past tests, therapies, and side effects.
acromegaly can cause serious health problems and even become life-threatening, if left untreated. treatment must be individualized and directed by a physician, and options include surgery, radiation therapy, and/or medication. acromegaly medications are either somatostatin analogues or growth hormone receptor antagonists.
while all of these medications share a common goal (to help relieve acromegaly symptoms), they differ in how they work, how often they are taken, and the way they are given. some are self-injected daily or every 28 days, with proper training, whereas others can only be administered by healthcare providers or are taken in tablet form.
it’s important for individuals with acromegaly to talk openly with their doctor to choose treatment options that fit in with their health goals and lifestyle. symptoms and side effects can look different for each person – there really is no one-size-fits-all therapeutic approach. dan has experienced significant improvement in managing his condition since working closely with his endocrinologist. but it took time for him to get there.
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if you have acromegaly, talk to your doctor about treatment options you may not yet have considered. before your appointment, visit acromegalychat.ca for some discussion prompts and useful questions to help empower you on your journey.
this story was created by content works, postmedia’s commercial content division, on behalf of a research-based pharmaceutical company.
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