Spreading the word
North Sydney woman promoting awareness of rare disease
After years of not being diagnosed with a rare pituitary condition called acromegaly, a North Sydney woman is promoting awareness for the disease.
Peggy MacDonald, 51, has suffered from acromegaly since she was 18 and has spent multiple years bouncing back from different doctors and being misdiagnosed countless times. November 1 is Acromegaly Awareness Day and MacDonald has been a champion of the condition since she was diagnosed. She also founded the Atlantic Acromegaly Support Society, which has been helping people with her condition for over 10 years.
Acromegaly is a disorder caused by excessive production of growth hormone by the pituitary gland and marked especially by progressive enlargement of hands, feet, and face. Because it’s so rare, doctors don’t usually pick up on it. In MacDonald’s case, she spent most of her life being told she had conditions that she didn’t have.
“It started in my hands and my feet. I was getting pain in my knuckles, my feet and toes and it made it difficult to walk at times and my ring size and shoe size were changing,” said MacDonald, who added that her experience dealing with the disease was long and troublesome.
“I was diagnosed with carpal tunnel syndrome, and fibromyalga. I couldn’t sleep at night because my muscles were sore, my tissues were sore and at times you couldn’t touch my skin it was so sore. At the age of 27 I had a hysterectomy because at that point in time I was nine years into complaining over how my hands and feet were sore.”
At the age of 29, MacDonald’s teeth were removed because they were cracking and she was still not diagnosed with acromegaly. Her saving grace came at age 34 when she was diagnosed by a doctor she was not familiar with, accidentally.
“It took a physician who had never seen me before (to be diagnosed), which is usually how most people are diagnosed with the condition,” said MacDonald, who said being told about acromegaly was hard to handle, but she also felt validated after learning she had an inoperable tumour wrapped around her corotid artery in her brain.
“For the first couple years being diagnosed was ‘see, it was in my head. I wasn’t crazy. They just didn’t find the tumour,” said MacDonald.
Although the condition is irreversible and causes MacDonald to be self-conscious about her appearance - her shoes enlarged to a men’s size 10 and she wears a men’s size 10 ring - she got over her anger by promoting awareness for her condition so other people could identify their acromegaly sooner than she did.
“I had to get over the anger part of it, and how I did that was started concentrating on educating people – including physicians in the hospital,” said MacDonald, who added that she also wanted to connect with other people who suffered through her condition.
“I wanted to meet other people, but privacy rules dictated we couldn’t be told other people’s names, but we were very successful 12 years ago in June of 2005 to have had the first ever acromegaly support group in Canada.”
MacDonald said it was comforting to talk to people who have went through what she did.
“We could see the similarities
in each other and share stories and know that we’re not alone and that we could help each other. It was a huge relief.”
MacDonald has since helped champion her support group, that she founded and educate doctors and the public about her condition. The support group now has more than 80 members who meet in Halifax. MacDonald said that she is grateful that she’s been able to help others and she plans to keep doing that for years to come.
People can find out more about acromegaly by searching their Facebook page, which is called Atlantic Acromegaly.