Sylvain Berthelot Sylvain Berthelot

Episode 18: David Rose - Occipital Horn Syndrome

Occipital Horn Syndrome is an extremely rare disease. David Rose is only aware of a few people living with this condition. It took him many years to be diagnosed accurately, although he had been told early on that his condition was similar to Ehlers Danlos Syndrome (EDS)*. In our discussion, David shares tips about how to look after your mental health and how to stay active when you have a rare disease. We also talk about the importance of communities, which have become more accessible through social media.

The song David chose is Mr Brightside by The Killers.

*If you want to learn more about Ehlers Danlos Syndrome, listen to episode 7 with Mackenzie Abramson.

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Sylvain Berthelot Sylvain Berthelot

Episode 07: Mackenzie Abramson - Ehlers Danlos Syndrome

Mackenzie knew something was wrong when two different breaks wouldn't heal properly. However, it took multiple opinions before a doctor recognized the symptoms of Ehlers Danlos Syndrome (EDS). She explains how it affects her body, her energy levels and her mental health. She also talks about two other conditions that affect her, postural orthostatic tachycardia syndrome and chronic fatigue syndrome.

The song Mackenzie selected is Fight Song by Rachel Platten.

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