An Outaouais resident suffering from the same illness as Céline Dion suffers from related symptoms on a daily basis and says she has difficulty affording the necessary care.
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The disease only affects one in a million people and its rarity brings its share of challenges.
“It’s a full-time job,” says Jessica Forgues. What I do Monday through Friday is try to make it to the next day.”
Ms. Forgues says it took her a while before she was able to see a neurologist who was able to diagnose her.
She explains that doctors initially believed she had epilepsy.
“These types of symptoms can also be related to more common diseases,” indicates the general director of the Regroupement québécois des Maladies Orphanes, Jonathan Pratte. So, that’s why the diagnosis can be more difficult.
Access to treatment is also rare.
Ms. Forgues learned this week that she must obtain medication at a cost of $300 per week with her treatments.
This is an expense she cannot afford.
Celine Dion is about to release her documentary and it will highlight the issues surrounding her illness.
Ms Forgues hopes this will help advance the cause of rare diseases.
Although she is optimistic about the impact of the singer’s release, the Outaouais resident fears that the message will not be well understood.
“People like me, compared to multimillionaires, we don’t experience the same thing,” she says. We all suffer with this illness, but she also has the privilege of being able to afford the care she needs.”
The documentary “I am: Céline Dion” will be released on June 25.
