Kendra, who lives in Phoenix, AZ, was diagnosed with Marfan syndrome as a child. She is an advocate for people with chronic illnesses, chronic pain, and disability. Find more of her writing by following her Instagram @kendrawesomeness.
The broad goal of Marfan awareness is about seeing the complete person behind the diagnosis. My personal journey with Marfan awareness could be more accurately described as a journey towards Marfan acceptance.