Challenge of living with rare condition prompts Woodstock woman to speak out

Lawyer with rare medical condition speaking out A Woodstock, Ont. woman with a rare disease who is beating the odds shares her story to help others. CTV London's Celine Moreau reports.

A Woodstock lawyer is speaking out about the rare disease she has to raise awareness and bring hope to others facing health challenges.

It’s called Hereditary Angioedema (HAE), a rare condition that can cause severe swelling.

“It does hurt and my hands would double or triple in size and I would be a kid with the same size hands as my adult father," says Amanda Howlett.

Howlett was diagnosed with HAE as an infant and has experienced swelling for her entire life.

“Essentially anything can swell for me. My most common reactions were swelling in my hands...my feet and extremities, stomach was also a big one for me. It wasn’t until I became an adult that I got some of the worst swelling. My throat was a particularly scary one,” she says.

Howlett is one of approximately 900 Canadians living with this disease, but she’s not the only one in her family. Her brother and father both have been diagnosed with HAE.

She believes she’s been able to push forward and follow her dreams of becoming a lawyer because she wasn’t alone in dealing with the condition.

“I realize my situation has been so different from other people and a big part of that is because I was diagnosed so early and I wasn’t the first one in my family. I’ve grown up knowing this is something that other people are going through and it’s not just me.”

But she knows not everyone is as fortunate. In fact many people go for years without a diagnosis and the condition can be deadly.

Howlett is hoping by speaking out, more people become aware of HAE and that her story will inspire others.