Stronger Together

Rachel and Lara’s video interview part 1 – Living with Ehlers-Danlos Syndrome and their diagnostic odyssey.


This week, changemakers Rachel and Lara caught up to discuss their experiences of living with the rare disease Ehlers-Danlos syndrome (EDS), as well as their journey to diagnosis. EDS are a group of conditions that cause very flexible joints and stretchy and fragile skin. Common symptoms of EDS include unusually flexible joints and skin that stretches and breaks easily. EDS are often inherited from your parents.

Below you will find part 1 of their conversation. Remember to visit Lara’s Stronger Together page next week for part 2, where they discuss their experience of COVID-19, along with their recent advocacy efforts, including the I am number 17 campaign.

You can read Rachel’s full experience here.

This campaign isn’t just about us – it’s about you. If you live with, or care for someone with a rare disease, share your experience on social media using the hashtag. Help us be heard.

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