Fredericton teen fundraising for rare disorder

A Fredericton teenager raised money and awareness this weekend to combat a rare disease she wasn't even aware she had until an E. coli infection almost took her life two months ago. 

Micaella Boer was in Saint John on Sunday, taking part in a fundraiser for thrombotic thrombocytopenic purpura, an autoimmune blood disorder that causes the blood to become sticky and form clots in the body's blood vessels. 

The results can be deadly, causing heart attack, stroke, or kidney failure.

Boer and a friend were both hospitalized because of a near-deadly E. coli infection in July. 

Doctors believe the infection triggered the disorder, a condition that will affect Boer for life. 

Boer's father, Scott, said while Boer was in hospital she experienced swelling and turned yellow from jaundice, an indication of stress on the liver. 

Doctors suspected TTP might be the cause. They tested her and confirmed that Boer had the autoimmune disorder. 

According to the Answering TTP Foundation's website, infections can cause the rare disease to be expressed. 

Only three to four people in one million are diagnosed with TTP per year.

Boer said she is feeling much better now, but the disease is in remission, and she'll always have to watch for a relapse. 

"I'm just going to have to be cautious about everything I do and if I start to feel sick, just get checked up or get my blood done, just make sure that I live cautiously," she said. 

Cathy Cook, who is also diagnosed with TTP, said this is the first fundraiser of its kind in the Maritimes. Cook said there was one in Toronto last year but she couldn't make it due to a relapse. 

"Well, I can't do what I used to do before. I get tired very easily, you look at life a lot differently," said Cook.

"You don't take life for granted." 

Cook said she doesn't know what caused her to develop the disease in 2007, but her life hasn't been the same since.