Episode 39: Lauren McDermott - Stiff Person Syndrome
Stiff Person Syndrome (SPS) is a rare condition that leads to painful muscle spasms. Lauren believes she had her first symptoms in early 2010s, although she was only diagnosed 5 years ago. She explains how the condition affects her body and her mobility. She also shares the impact it has had on her mental health and how she manages her energy levels to keep SPS at bay as best as she can.
The song Lauren chose is It was a good day by Ice Cube.
Episode 31: David Hogan - Cowden Syndrome
David had confirmation of his diagnosis of Cowden Syndrome after his mum passed away with the same condition. David talks about isolation after being diagnosed, and the urge he felt to do something for the rare disease community. He now leads a group open to all men with rare disease, focused on mental health. Through this, he provides a platform for men to open up, or listen to others.
The song David chose is Dream Baby Dream by Bruce Springsteen.
Episode 29: Sabina Kineen - Fabry Disease
Sabina's dad was the first in her family to be diagnosed with Fabry Disease, which is hereditary. Sabina and her sisters were all diagnosed with it shortly after, but there was little known about it at the time, in the early 80s. We talk about the many symptoms that are related to Fabry, including ones affecting mental health. Sabina also shares about the guilt that people can feel with inherited diseases, when it is passed on to their children.
The song Sabina selected is We are family by Sister Sledge.
Episode 27: MarlaJan Wexler - Lupus
MJ has had lupus for many years and it sent her to the emergency rooms many times before she got her diagnosis. In this discussion, we get a feel for how she was impacted by the gaslighting within the healthcare system and the lack of support at home. MJ talks about the symptoms of lupus and how the auto-immune disease affects her body. We also discuss patient advocacy and how meaningful it is for MJ to share with the community.
The song MJ selected is Walk by Foo Fighters.
Episode 03: Alex Wisch - Depression
Alex’s journey with depression is profound. He talks about extremely tough times, multiple hospitalisations and almost taking his own life. His determination is exceptional though, an example of how to overcome your own challenges.
The song Alex selected is Dance Monkey by Tones & I.