Loving someone with FSHD means loving someone through constant change, a path that Leah & Joe have traveled together since they met in 8th grade. Despite coming from a family with FSHD, Joe faced a long diagnostic journey filled with uninformed and misinformed care providers, leading the couple to do their own research with considerable trial and error. In this episode they discuss the importance of community support, how to adapt, supplements and vitamins, why you need to hydrate, and so much more. Married for 15 years and together for 20, Leah & Joe’s partnership proves their philosophy: when living in an inter-abled relationship, what you really need is more laughter and more love.
No one knows the experience of living with FSHD better than those who have it. FSHD Straight Talk features stories of life with this rare disease. Tune in to learn from, laugh, celebrate and sometimes grieve with fellow members of the FSHD community. Whatever your journey, we hope you’ll find yourself in these episodes and know you are not alone.
On the second and fourth Tuesday of every month, listen for a new episode of FSHD Straight Talk with Tim Hollenback! These episodes highlight members of the FSHD Community who are living rich, full lives and diving into their experiences with FSHD.
If you would like to share your experiences living with FSHD, please reach out via email or send us a message on social media.
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