As many within the rare disease community already know, it can be hard to find someone to talk to who truly understands the ups and downs of living with mito. As a specialist rare disease counselling and psychotherapy service, Rareminds recognise the importance emotional support can bring when feelings like loneliness and isolation occur.
It was Katie, our Patient Engagement & Advocacy Manager, who first discovered them whilst attending a session on mental health training for people working in charities. One of the speakers at the session was Kym Winter, Clinical Director and Founder of Rareminds, and her words really resonated with Katie.
We’d been looking for a while at expanding the psychological support services we offer to our patients and families, so this felt like a great opportunity to collaborate. We got in touch with Kym and she told us how the therapists at Rareminds have a real understanding and appreciation of the unique challenges that come with a mito diagnosis.
It felt like a good fit, especially because our specialist counsellors, Rebecca and Louise, have both undertaken additional training with Rareminds on Counselling for Rare Diseases, so they’re in a great place to support the mental health and wellbeing of our community.
And Kym is as excited about this partnership as we are. “The Lily Foundation is exactly the sort of organisation we hoped to work with when we founded Rareminds in 2020”, she said. “Living with any rare condition is inherently challenging. Those with mitochondrial disease face particular psychological challenges and have unique experiences that may understandably impact mental health and emotional wellbeing.”
Need to talk to someone?
Are you reeling from a recent mito diagnosis? Or perhaps you’re dealing with some difficult symptoms, or worried about the impact the disease is having on your loved ones or your ability to work. If you’d like to talk to someone, Lily Foundation counsellors provide a safe, confidential space for you to work through difficult thoughts or feelings, and explore new ways of approaching your challenges. Find out more.