Staying Connected

I just started binging this podcast after sending in a sample for DNA test for vEDS. I’ve suspected a connective tissue disorder ever since for ever but especially after researching the cause of a bilateral vertebral artery dissection after… existing? No bungee cord jumping, no football, no car accident, just minding my own business. Doctors said no, you don’t have Marfan’s. Yup, this is true. I finally found doctors who agreed with me and noted there are EDS subtypes and I have many of the signs and symptoms of EDS. Listening to the stories that are so similar to my own is so validating. Katie is so good at interviewing! She is kind, gentle, and empathetic. She asks just the right questions too. Even if my DNA results are negative for vEDS (OMG, if not vEDS, then what!?) I think I will still listen to this podcast, it is very educational and interesting. I think it’s helpful for anyone with any chronic health conditions. Keep up the great work Katie! Or, don’t if you don’t want to, or can’t. That’s okay too, just keep being you though okay? Just know that what you are doing here is meaningful.

The best and most informative podcast on vEDS. Incredible for anyone with the condition or related to someone who has it. Katie and her podcast are a gift to anyone dealing with vascular ehlers danlos syndrome.

This podcast provides a fascinating and informative window into a rare condition and its many serious issues. For those going through the often long diagnostic odyssey, it’s probably the best resource available online. It is frank and unflinching, but also deeply hopeful. It should be required listening for doctors who treat VEDS patients.

Definitely worth subscribing to.