For more than half of her life, Danni Maxwell has been in and out of hospitals and doctor’s offices.
The 21-year-old lives with a disorder called hidradenitis suppurativa (HS), an inflammatory disease that causes skin abscesses or cysts to occur over many areas of her body.
The infections often occur near hair follicles, lymph nodes and sweat glands, and it has left extensive scarring on Maxwell’s body that makes her self-conscious.
Maxwell has experienced six surgeries to treat HS, and has two more coming up that are required now to help her combat pain caused by the cysts that develop and spread in her body.
The disorder has disrupted many areas of Maxwell’s life. She missed a lot of school through her childhood, missed out on friendships, and has had to miss semesters of her college program due to surgeries or flare-ups. She commuted to Toronto with her mom, Roxanne Warren, for a decade to be treated by a doctor at SickKids Hospital.
Her disorder is something that Maxwell has kept secret from most people — until now.
Now, she’d like to help raise awareness about a disorder that most sufferers keep hidden.
“Everyone knows I’m sick and that I go to the hospital a lot, but they don’t always know what’s going on,” she said. “Now I’d rather just tell people.”
Maxwell’s struggle has been significant.
“It hasn’t been easy,” Maxwell said. “You just kind of take the good days with the bad. There were points in time where there were more bad days than good, and it got to the point where I didn’t want to do anything or see anyone.”
Maxwell has been working at a local elementary school helping with lunches and in the classroom, but she often has to call in sick due to pain.
“It’s really discouraging for her, knowing she has a job she likes, now she’s got to give it up because of what’s going on,” Warren said.
Staying positive throughout her experience has been important to her. Maxwell is working online on the library and information technician program at Confederation College. Her short story, A World in Blue, was recently published by NineStar Press.
“I can’t let my illness define who I am as a person or what I do as a person, despite this being a physical disability,” Maxwell said. “I can’t let it control who I am. If I do that, then I’m not really living.”
Maxwell requires two new surgeries in the near future to remove infected tissue. Her recovery time will be from six months to a year, and to help with expenses the family is hosting a fundraiser at Royal Canadian Legion Branch 631 in Collins Bay on Sunday, Sept. 30.
The event will feature games, food, a DJ, karaoke, a silent auction and more from 1 to 8 p.m. For information, call Roxanne Warren at 613-532-4132.