KAMLOOPS — More than 22-hundred people in Canada are living with 'Acromegaly' a rare hormonal disorder that speeds up a person's rate of growth at a faster than normal pace.
The disorder causes abnormal bone growth which means patients grow to taller than normal heights and have larger than normal hands and feet.
Because it is such a rare disorder, proper diagnoses can often take years.
That was the case for one Kamloops man who endured years of suffering before he was finally diagnosed.
Wednesday marks Acromegaly Day, a day to bring awareness to the disease and those who live with it.
Brent Baker was in his early 20s when he experienced a sudden growth spurt.
"I put on another two inches and my feet started growing," said Baker. "I went from an 11 shoe size to 14 and still moving up."
The last 25 years of Baker's life has been filled with medical issues, with the married father-of-two diagnosed with diabetes as well undergoing numerous teeth alignment procedures.
"You're always dealing with each issues separately because you don't know there's a connection which is obviously an issue in the medical industry" said Baker.
In 2009 a General Practitioner in Edmonton was finally able to connect the dots.
"I was exercising and trying to get into shape," said Baker. "I asked him 'what should my target weight be because I don't think the BMI really applies to me since I'm told from surgeons my bones are pretty big. He said 'what are you talking about'? I reached out and shook his hand and he said 'we should do a blood test.'
Blood tests revealed Baker had Acromegaly where a tumour sitting on the pituitary gland causes an increase in growth hormone.
Baker has undergone numerous surgeries to remove parts of the tumour.
He is one of 22-hundred people in Canada living with the rare disease.
In 2009 the Vancouver Acromegaly Support Group was formed to bring people living with the rare disease together.
"The reason we pull together is to be able to get knowledge out there of the signs and symptoms of 'Acromegaly and to have people understand what Acromegaly is," said Deanna Badiuk, Founder of the Vancouver Acromegaly Support Group.
With some diagnoses like Baker's taking more than twenty years, one of the group's main initiatives is to increase education among the medical industry on what the disease is and common symptoms.
"This rare disease really isn't that rare," said Badiuk. "They need to have the knowledge to put things together and think outside the box. When people come in saying 'why am I sweating profusely? Why do I have gaps in my teeth? Why are my hands and feet growing? GPs can say 'I think you might have this, let's do blood work.'
Today Baker spends up to $12-thousand a month in medicine to keep his hormones balanced.
Along with starting up a similar support group in Alberta, the former business consultant is now pushing to have centers specializing in treating pituitary issues opened in smaller rural communities.
"We want to have a centre of excellence not so much that it's a building you go to, but even if it was simply a connected net of physicians that we deal with on an ongoing basis that had some kind of coordination of their activities."
For more information on Acromegaly support services, visit acromegalywest.com
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