Episode 156: Emily Levy

Uninvisible Pod with Lauren Freedman

Overview

Last episode as of Dec 2023

Emily Ana Levy is a distinguished social impact entrepreneur, renowned patient advocate, healthcare Key Opinion Leader, and acclaimed international public speaker. Emily's journey led her to co-found Mighty Well in 2016. It’s a startup driven by her personal experiences as a patient grappling with chronic neurological Lyme disease and autoimmune conditions, along with the challenges of managing vascular access devices. Mighty Well's direct-to-patient brand offers innovative medical products and comprehensive digital learning on vascular access, empowering patients to confidently navigate their health journey. With an unwavering commitment, Levy and her team have successfully launched seven adaptive medical products, notably the Class 1 FDA-registered PICCPerfect® Pro. Emily and Mighty Well's impact has been featured across various media outlets such as The New York Times, The Wall Street Journal, Who What Wear, The Boston Globe, PBS, Forbes, and more. In 2021, inspired by her transformative healing journey in the Amazon and stepping into her gifts as a seer, medium, and deathwalker, Emily established Hamsa Healing. In her practice, she is dedicated to facilitating clients in experiencing profound healing practices from the Amazon and the spiritual realm — practices that played a vital role in saving her life and putting her chronic illnesses into remission. Currently residing in Providence, the heart of the Ocean State of Rhode Island, Emily finds solace in cold water plunges that invigorate her senses and ground her in the present moment. She cherishes moments at home with her two adopted poodles, a warm blanket, and a cup of tea; valuing introspection over bustling networking events. Emily remains devoted to self-discovery, eager to share her insights with folks who, like her, have felt marginalized within a business and medical system that often overlooks their needs for visibility, understanding, and validation. What started as an entrepreneurial journey to 'turn sickness into strength' has now become one of learning strength from sickness.

Key Links

Mighty Well

Dr. Casey Kelley on UP - Ep 118

Takeaway

Tune in as Emily shares:

* that she’d blocked out a memory of being bitten by a tick at the age of six; she was bitten again at the age of 12, alongside having confirmed EBV

* what her initial symptoms were like

* how she was overlooked because of her age and gender — and initially put on birth control to control her “hormones”

* that she finally found a Lyme-literate NP in her home state when in college — and received the diagnosis of Lyme and tick-borne illnesses at the age of 19

* her additional diagnoses: POTS/dysautonomia, Hashimoto’s disease, CIDP (chronic inflammatory demyelinating neuropathy), C-PTSD, and Gilbert’s syndrome

* that she went to see Dr. Casey Kelley after hearing her episode of the show!

* how her lived experience informs the creation of adaptive devices and wearables for Mighty Well

* how she was able to embody her identity as a disabled person — coming from a family of athletes

* that she had a lot of Lyme support in college, but also felt “othered” in the sense that she had to advocate for her health for the first time

* what a typical day was like for her before remission

* her rumination on the invisibility of her diagnoses — and their few visible signifiers, which included her PICC line and chest port, as well as her occasional use of a cane

* how exhausting it can be to tell people your life story when you live with invisible illness and have to provide validation to others

* the epidemic affecting women in healthcare: acute infections, especially those presenting with multiple and varied symptoms — and how important it is to listen to and include women, both in treatment and in research

* how her family background in textiles informed the Mighty Well product line

* her advice for fellow spoonies and entrepreneurs

* why living near the water is so important for her

* that she has trained her dog, Olive, as a medical alert service animal

* her belief that ketamine therapy saved her life, with regard to the diagnosis of C-PTSD

* her endorsement of plant medicines and herbs, and why she has moved in that direction where her ongoing treatment is concerned

This is a public episode. If you would like to discuss this with other subscribers or get access to bonus episodes, visit uninvisiblepod.substack.com