In 1994, Deanna Babiuk-Black seemed impossible.
In 2008, she had a heart attack that would be the shape of things to come. Soon after, she was diagnosed with acromegaly, something she that had been living in her for years and finally had a name for.
This rare disease is characterized by the pituitary gland creating a massive amount of growth hormones after puberty. In some case, it is the result of a benign tumor on the pituitary gland. The purpose of the pituitary gland is to keep the hormone levels in check. When this is compromised, so are the organs, bones, soft issue and muscles. To learn more about this rare disease, click here.
Now that she had a name and identity for her disease, she began familiarizing herself with every aspect of it and learning how cope with them in ordinary life. The side effects that she struggled with the most were lack of energy, excessive sweating, enlarged head size, hands and feet, gaps between teeth, vision problems, and chronic migraines.
Since she had three daughters, she knew she had to set a positive example to them- even though she was suffering. In order to do that, she sought out the support of others like her. She took a negative and turned it into a positive by starting her own support group in Vancouver for those with acromegaly.
After hearing the voices of other people with the rare disease, she realized her struggle wasn’t so rare after all. There are 2,000 known cases of acromegaly in Canada, but Deanna knows that this number is much larger in reality. Thousands of people have it, they just don’t know it yet.
In September, Deanna hosted the very first National/International Acromegaly Conference in Canada, a union of specialists, patients, and pharmaceutical representatives all collaborating on the disease.
“For as long as I live, I will keep moving forward with this mission so that no one with acromegaly feels alone, and so that other Canadians understand how they can support their loved ones when diagnosed with acromegaly,” said Deanna in Huffpost. “If not for myself, then for my daughters.”
Read the full article in the Huffington post here.
Check out the Vancouver Acromegaly Support Group here.
