At the age of 10, Enya contracted Lyme disease. This rare disease is transmitted by a tick bite. Enya and her family went through hell before she was diagnosed and treated. On average, Lyme disease affects 2.7 per 100,000 Canadians. Most cases are in Quebec, Ontario and Nova Scotia. Diseases are considered as rare when they affect 1 in 2,000 people.
Three years later, Enya still suffers from the effects of this rare disease. To prevent similar suffering in other children, Enya’s parents started “Enfance Lyme Quebec”. This is their story.
Against all odds
Everything happened very quickly for Enya and her family. Enya suddenly developed the first symptoms of Lyme disease. They ranged from swollen feet to headaches and hives everywhere on her body. The family spent four consecutive weeks at the local hospital. A large battery of tests did not find any answers for her condition. Enya’s physical suffering worsened, until she was no longer able to walk.
Psychiatric care the only option
Out of options, the nursing staff requested her transfer to psychiatric care. She remained there for 17 days. Family visiting rights were restricted. Enya’s physical and mental health worsened. Doctors questioned the truth of her ailments. The events of this difficult time traumatized her.
Enya’s parents, Audrey and Georges, decided to remove their daughter from psychiatric care. The hospital resisted. Simultaneously, a youth protection organization (DJP) filed a complaint against the family, because Enya had missed several weeks of school. Left to their own devices without a diagnosis, Enya’s parents had to fight the healthcare and legal systems. Both limited and hampered them, offering no support.
“Enya is still so traumatised, from her passage in psychiatric care, to this day she cannot sleep with any door close in our house”–Audrey Munger, Enya’s mother and founder of Enfance Lyme Québec
Finding the diagnosis on their own
On their own, Audrey and Georges discovered similarities between their daughter’s symptoms and Lyme disease. They arranged to get a test for Lyme and co infections outside of Quebec. The test confirmed its presence. After Enya’s diagnosis, the DPJ dropped their complaint.
Treatments received outside Québec have greatly helped Enya; however, she still suffers from physical ailments linked to Lyme disease.
For a better recognition of Lyme disease
Our healthcare system has serious shortcomings in addressing the diagnosis and treatment of children with Lyme disease. Yet during this period of a worldwide pandemic, it’s even worse. In fact, in Quebec, the only doctor who treated patients with Lyme disease closed his office for many months to devote himself to COVID-19 research. Therefore, people with Lyme disease must wait longer or seek care in the few provinces where it is available.
Canada is one of the few industrialized countries without a national strategy for rare diseases. One in 12 Canadians suffers from a rare disease like Lyme disease. A national strategy would be a first step to direct our healthcare system to recognize the seriousness and prevalence of Lyme disease, deploy resources to diagnose it, and offer assistance to families, who should not find themselves searching for a diagnosis on their own.
There is a real void in our healthcare system regarding Lyme disease: a national rare disease strategy will help recognition of this disease”. Audrey Munger, Enya’s mother and founder of Enfance Lyme Québec
Learn more about Lyme disease
Enfance Lyme Québec, here.
Lyme disease organizations:
Stories about Lyme disease:
Lyme Disease on the Rise, here.