LYME DISEASE. Unacceptable. This is the word that comes to mind when you read the story of Stéphanie Lavoie. Bedridden in the dark, she’s just waiting for a little light in her life.
Take a breath of fresh air, feel the sun on your skin, talk with your friend, use your cell phone, eat for yourself, look at a landscape. All simple things we do without realizing it. This is not the case for everyone. Stephanie Lavoie has Lyme disease, which is caused by bacteria transmitted by an infected tick. In his case, the disease completely took away all quality of life. The fact of not having a family doctor complicates her situation excessively.
An infected tick
She is not sure if she was bitten by an infected tick at a day camp while working there or while visiting a blueberry field. That summer, 8 years ago, she had a bad flu with a lot of night sweats.
“I don’t remember how I suspected it was Lyme disease. I was in a low-risk region,” she explains. Having no family doctor, she decides to go private. A clinic in Germany confirms the diagnosis, as does another test analyzed in the United States.
The 29-year-old then had plantar fasciitis, then burning in her feet that made walking hellish. The wheelchair has appeared. Six months later, it was numbness in the arms, followed by joint pain. In the past year, his case has degenerated.
Her days are spent lying down, because the sitting posture is too painful. They also happen in the dark, because of dryness and eye pain. Her father made her a kind of tent so that she might be in total darkness. She no longer leaves her room, which is kept at a humidity level of 72%, because of the dry mouth, which also prevents her from speaking. The joint pains make her suffer constantly. In short, she can no longer walk, use her hands, express herself, see. Lyme disease attacked Mrs. Lavoie’s entire system. Only hobby: the podcasts she listens to.
To complicate matters, tests revealed eosinophilic gastroenteritis, a rare condition that causes chronic inflammation in the digestive system. Despite hospitalization and cortisone treatment, she still cannot eat properly. It feeds mainly on bananas and rice. She weighs 70 pounds, a worrying weight for an adult.
The frail young woman lives alternately with her parents and with her spouse. Her father, who had retired, had to return to the labor market. The carpenter works hard. Her mother stopped working to take care of her daughter.
The family, originally from northern Lac-Saint-Jean, moved to Drummondville to be closer to specialists. His sister Cathy, mother of two toddlers, also lives in Drummondville.
A boat captain
Cathy Lavoie hopes that her sister has access to a family doctor: “It’s a big problem in her case. There is no “captain of the boat”. When we call the Orphan Customer Access Desk (GACO), we are told that it is not a priority, because it does not fit into any box. However, his condition is critical, ”she is indignant. Stéphanie Lavoie therefore turns to the private sector.
She does not have access to the Lyme disease clinics that are opening in Quebec, because she is not referred by a family doctor.
“The gastroenterologist told me earlier that since there is no navigator, it stops there for him if the results are good. If the biopsies are good, I stay with my stomach problem,” she says.
Stéphanie Lavoie would like to have access to a treatment that is given in Mexico. The cost ? $50,000 just for the treatment. “That’s why we make a Gofundme, but also because we can’t, I so need a lot of stuff. 45 minutes with a private doctor this week was $300. A treatment for my eyes: another $300,” she says.
A woman of heart in search of a little hope
Stéphanie Lavoie is a social worker by trade. Her sister explains: “Despite her situation, she worked until a few months ago. She’s been sick for 8 years. She was even making calls during Covid, mental health was not going well for everyone. She was at the front and she was still taking calls, bedridden, with a headset. She did this as long as she might talk, to help those who are not well. She was not well, but she continued to help others. It touched me to see her devote herself to our society when she was so in need.
Stephanie Lavoie is struggling to find hope right now. She breaks down in tears saying, “I can’t take this forever. Neither did my relatives. They put their lives on hold for me. My parents do not take advantage of their grandchildren as they would have liked. My dad wouldn’t be supposed to work. My mother no longer has a life… I met my spouse 2 years ago, then quickly I had a big decline, since then he takes care of me. For his morale, it’s hard. When is it going to stop?”
She finds it hard to imagine the coming summer, when everyone is outside, bathing, going to the terraces, while she is lying in the dark.
Parents are also discouraged and exhausted. “We live on hope, we knock on doors. Just the morning routine, it takes us 50 minutes at 2”, specifies Chantale Landry. At each appointment, Mr. Lavoie must miss work. All trips are made without heating or air conditioning because it makes the air too dry.
“Stéphanie is courageous, diligent, determined, hardworking. I can’t believe that following all this we’re going to lose her. I can’t believe that in 2023, on the planet, we can’t take some pain away from him. We no longer see the happiness in our daughter’s eyes. I like to say that one day, she is the one who will help others,” says Ms. Landry with pain.
Disease engulfs everything in the person’s ecosystem. Stéphanie Lavoie would like to give up. A ray of light would suffice.
Note that in 2021, cases of Lyme disease doubled in the region compared to last year. It is recommended during the summer to be vigilant, to protect yourself and to inspect yourself when returning home following an outdoor activity.
You can contribute to the Gofundme organized to help with the care of Stéphanie Lavoie here: https://gofund.me/f56f9983
