Find out what others are saying about CIU

Kayla's picture

Kayla Creighton

“Living with the ongoing physical impact of an autoimmune disease is difficult, but the stigma associated with it makes everything even harder. I have suffered from chronic idiopathic urticaria (CIU) since the age of six. I spend significant time worrying about many of the unpredictable effects of my condition. Will I need to visit the hospital today because of severe swelling impeding my ability to breathe? Maybe. Will I be well enough to return to university? I hope so.

Outside of the physical aspects of CIU, my emotional health has been impacted too. I have suffered from anxiety since elementary school. I was often teased about my skin and questioned about being contagious. Even after explaining what CIU was, the teasing didn’t stop. I ended up developing an eating disorder which caused damage to my body.

While CIU is a constant challenge to manage, it has made me a strong and determined 19 year old. I found that speaking up about this little known autoimmune disease, to bring awareness and understanding, can only breed positive results for myself and other CIU patients. To keep a dialogue open between myself and other Canadians managing CIU, I frequently turn to social media groups for support.”

Luke's picture

Luke Andrades

“It was the week before a school trip to Mexico when I had my first breakout of hives. My doctor thought I was having an allergic reaction and off I went. My vacation ended but the hives didn’t go away. I spent years not understanding what was happening to my body. Was I eating something? I worked at a gas station. Maybe it was the fumes? Nothing seemed to help and I became very private as a result.

At times, I feel like I lost part of my young adult life because of this unknown disease. I was quite athletic, playing soccer and hockey, but had to stop once the hives began. Dating with a condition that affects your whole body is hard to explain to a new partner, especially when doctors aren’t able to explain it to you. When doing presentations at school and work, you think the hives are all the audience sees. It was a lot to handle.

Last year, I went online to look up my symptoms again and I stumbled across CIU. As someone who was misdiagnosed for years, finally learning what the disease was and how to manage it was a relief. My life drastically improved, including playing soccer again! I have also been able to connect with other patients in a Facebook group where I can share my experience and provide support for others facing similar challenges.”

Elaine's picture

Élaine Déry

“One of the most frustrating aspects of living CIU in the early stages was the search to identify the triggers. It was an exercise in futility which, among other things, forced me to cut out some of the foods I enjoyed most, such as strawberries, chocolate and coffee. It’s tough to have life’s simple pleasures just taken away from you.

If only it were as simple as changing your diet. At its peak, the disease takes over your whole life and you’re just left wondering: “Am I going to be able to make it through the day?” Imagine having an itch that lasts 24 hours, seven days a week, for a period of up to a month. I dare anyone to maintain their composure and try to lead a normal existence. It’s virtually impossible and it affects you and everyone around you – in your personal, professional and family life.

With appropriate management, the feeling of isolation slowly dissipates and you’re able to regain some sense of normalcy. You’re never quite your old self because the disease always stays with you, but it’s like putting a cover on a pressure-cooker. You just let it simmer without ever reaching the boiling point!"

With CIU, you can develop hives at any time without warning.
CIU can affect your quality of life!