This week, changemakers Lara and Rachel met to continue their conversation about their experiences of living with the rare disease Ehlers-Danlos syndrome (EDS). As well as, sharing their experiences of COIVD-19 and their recent advocacy efforts to help increase awareness of rare disease and EDS.
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 break easily. EDS are often inherited from your parents.
Below you will find part 2 of their conversation. Check out Rachel’s Stronger Together page for part 1 of their chat, where they discuss living with EDS and their diagnostic odyssey.
You can read Lara’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.
#IAmNumber17