The girl with Hereditary Angioedema (HAE) is 22-year-old Jordyn Campbell from Brampton, ON. HAE is a rare and life-threatening genetic condition that occurs 1 in 10, 000 to 1 in 50, 000 people. HAE symptoms include episodes of swelling in various body parts including the hands, feet, face and airways.
All her life, Campbell was dubbed as a medical mystery consistently in and out of hospitals and surgeries with every imaginable problem. In 2017, she was diagnosed with HAE after the disease nearly took her life.
Her cause? Genetics. Inheriting the genetic fault from a parent is the rarest cause for HAE. Campbell does not have enough of a substance known as C1, which causes the immune system to “misfire” and cause swelling. Campbell has a 50% chance of passing the genetic fault onto her future children.
Grade 11 (2012) was the first time Campbell ever swelled, she woke up with a swollen hand. After that, it reoccurred at least once a month on either her hands, arms or feet. No doctor or specialist could pinpoint what was going on.
“I grew more and more sick, but I was so sick of going to the hospital that I wouldn’t go unless I was sick for more than 15 hours. I remember crying a lot and questioning ‘why me?’”
This time last year, Campbell was in her fourth year, living away at home, at Nipissing University. Campbell developed a terrible cough and sinus infection. She began having trouble breathing.
“I remember walking to the bus for school and standing there crying because I was just in so much pain that I could not breathe in and out, but I couldn’t afford to miss more class to once again go to the hospital.”
Campbell took the bus, arrived at school, found the first person with a car and asked them to take her to the emergency. Immediate X-rays and MRIs were taken. They had Campbell on steroids and pain killers. She was once again told, “We don’t know what’s wrong.” She was sent home for these words to haunt her.
Campbell noticed she could not swollen food. She waited and made a doctor’s appointment. Campbell went, they sent her to a specialist in the building who then rushed her to hospital. Her airways were closing.
Campbell was put on life support. Doctors and nurses believed she would only need it for 24 to 48 hours, but it ended up being five long days later. Campbell’s mother, Patricia Campbell, was on the next bus from Brampton to North Bay.
“I didn’t even know my mom was with me. I was on morphine and it’s all a blur. After this just happened I was afraid to live. I was afraid my throat was going to close again. I didn’t understand why I had almost just died and was put on life support.”
A month later, Campbell heard about HAE from talking about it with some people. After multiple google searches, Campbell realized her symptoms were a perfect match.
“I saw the words ‘rare disease’ and the statistics I was just so shocked. I lived for so long with people telling me there was nothing wrong with me so how could I believe this now.”
After a visit to a specialist and one blood test, Campbell was diagnosed and thrown into this world of rare diseases.
A couple months later, Campbell’s little sister, Dani Campbell was also diagnosed with HAE even though she has never had a swelling attack. Jordyn and Dani are the only HAE patients in Brampton. They receive treatment once a week, a preventative treatment to stop attacks. The medication is known as Cinryze, which is the fifth most expensive drug in Canada.
“I couldn’t fathom that this was my life now. But when I really thought about it, this always has been my life and my diagnosis was the greatest blessing I had ever been given. To be given the opportunity to be treated, share my story, encourage and reach out to people struggling with rare diseases globally. I can’t thank my doctors enough for saving my families sanity and mine and my sisters lives. A disease may be rare but hope should not.”
Campbell has created a YouTube channel to raise awareness of her story and rare diseases, she is “The girl with.”