In this episode, I interview Lindsey, who is a fighter of CLOVES Syndrome. Lindsey is a 26 year old CLOVES patient that was initially diagnosed with Klippel Trenaunay Syndrome, another PROS condition. She currently lives in Dallas and is finishing up her Master’s degree in theology. Her interest in theology of suffering and flourishing is rooted in her journey as rare disease patient with recurrent health complications and challenges. She’s an AllStripes ambassador and CLOVES Family Advisory Council member who loves serving the rare disease community. CLOVES Syndrome is an ultrarare condition that is a recently described rare disorder characterized by tissue overgrowth and complex vascular abnormalities. It is extremely rare, only affecting 150 people worldwide.
Keep up with her advocacy journey!
Instagram: https://www.instagram.com/edwards_linds/
Twitter: https://www.twitter.com/edwards_linds/
Blog: https://growinginthegroaning.com/
