Gino Odjick’s rare disease: What is AL amyloidosis?
WATCH ABOVE: Former Vancouver Canucks player Gino Odjick has posted an open letter to fans, saying he has a rare terminal disease and has just months, possibly weeks, to live.
He’s a Vancouver Canucks legend remembered as an enforcer for the team. But former hockey player Gino Odjick says he’s now in for the “biggest fight of his life.”
Two months ago, he was diagnosed with a rare terminal disease called AL amyloidosis. Doctors have told the 43-year-old he may have only weeks to live.
“I’m telling you about this now because news is beginning to leak out and I wanted you to hear it from me,” Odjick wrote in a letter published Thursday night on the Canucks website.
“I also want you to know that my spirit is strong even if my body isn’t. I’m going to use all of my time to be with my kids and everyone I love.”
Odjick said he first noticed something was wrong when he grew short of breath. He went to hospital, and within 48 hours, he was handed the tragic news.
What is AL amyloidosis?
Substances called amyloid proteins – produced by cells in your bone marrow – build up in your organs and deposit in tissue or organs. The proteins are very sticky and take hold on your organs causing serious damage.
The disease can affect different organs in different patients, but it typically occurs in the heart, kidneys, liver, spleen, or gastrointestinal tract.
“It’s causing abnormal protein to be produced and deposits are being formed on my heart. It’s hardening my heart and my doctors aren’t sure how long I have to live,” Odjick said.
“Initially they thought years, but now they think it could be a lot less. I could be down to months or even weeks,” he said.
Amyloidosis Foundation says AL amyloidosis is a rare disease with only 1,200 to 3,200 new cases reported each year in the United States. Delgado said it affects about five to 10 people per million per year. And typically, its victims are 45 to 70 years old.
The tricky part about this disease is that its symptoms are too generic.
“It’s very difficult to recognize because it usually affects multiple organs so there can be a long range of symptoms that are non-specific, like tiredness and weight loss,” Delgado told Global News.
Because the warning signs aren’t caught early on, most people head to specialists too late in the course of the disease.
“There’s not much to offer in some of these patients. But if it’s detected in the early stages, the prognosis is relatively good,” Delgado explained.
Shortness of breath, which tipped Odjick off that something was wrong, is a common symptom, the Mayo Clinic says. As the proteins build up in your heart, the organ’s ability to fill with blood in between heart beats weakens.
Less blood is pumped with each beat and your body has a hard time managing blood flow. If the amyloidosis plays with the electrical system of your heart, it affects your heart’s rhythm.
Delgado doesn’t treat Odjick or know specifics about his case, but in other scenarios, treatment can include chemotherapy or stem cell transplants.
“I presume that the disease is very advanced meaning the protein is probably deposited in many organs but most likely his heart is affected. If his heart function is abnormal, it’d make him high risk for any treatment,” Delgado said.
In the meantime, Odjick is in hospital under the care of doctors. He’s also surrounded by his kids, sisters, family and friends, he said.
“I feel very fortunate for my life. During my career, I played in some great NHL cities, including Vancouver, Long Island, Philadelphia and Montreal,” he said.
But he singles out Vancouver: “In my heart, I will always be a Canuck and I have always had a special relationship here with the fans. Your ‘Gino, Gino’ cheers were my favourite. I wish I could hear them again. You have been amazing,” he said.
Read more about how you can help here: Gino Odjick fans planning rallies in Vancouver
Read the full letter here.
– With files from Yuliya Talmazan
© Shaw Media, 2014