When Emily Levy was a sophomore in college, she was diagnosed with neurological Lyme disease and required a PICC to facilitate her treatment. This PICC was the first of many vascular access devices Emily has depended on and, unfortunately, Lyme was only the first of many diagnoses to come. Despite facing long term illness and treatment as a young college student, Emily did not let sickness slow her down. Her experience as a patient inspired her to start Mighty Well, a social-impact start up that creates innovative products in the emerging Adaptive Wear market that is focusing on inclusivity in the chronic illness and disability communities which affect 1 in 3 Americans. Levy and her team are leading the global charge of helping patients and caregivers turn sickness into strength with the vision of Mighty Well being the Under Armour of Health Care. She is a passionate patient advocate and a leader in the growing adaptive wear space, developing new and innovative ways for people living with illness and disability to live a full and empowered life.
Today we are excited to share our exclusive interview with Emily, sharing her story as a patient, advocate, and member of the Eloquest Healthcare community. Check out a few highlights from our interview with Emily below!
Can you tell us about time that you have been challenged by your illness?
I’m 26-years-old, but my lifestyle is closer to that of my 80-year-old grandmothers. Illness has forced me to reshape my life and expectations for myself every day. Today, I spend my days building and managing Mighty Well, while also finding time for doctors’ appointments and daily naps. I certainly work hard, but I’ve learned that my day has to be modified around my medical needs. Chronic illness makes it so that I cannot live a life that looks like my 26-year-old peers. I can get everything done and do anything I put my mind to. It just has to be at my own speed.
How did you overcome that challenge? How did you turn sickness into strength?
I’ve learned that my illness is not a disability – it’s my super-ability. Because of my health setbacks, I am better at managing my time and priorities. I’ve turned my health struggles into an empowering community for other patients (my Friends in the Fight) and have dedicated my career to uplifting other patients. My experience as a patient has taught me so much and gives me a unique perspective in today’s healthcare industry.
I’m learning to move away from a sense of lack, and refocus my thinking to accept that the right things will come to me at the right time. I am working on forgiving myself for missed opportunities. And I have come to understand that my illness has given me purpose in my life from a very young age.
Though I’ve had to reshape the way I live my life, I’ve also learned to become an advocate, working towards transforming the way the healthcare system influences all of us.
How have issues with dressing removal impacted your life as a patient?
Learning to adapt to life as a patient, specifically one living with vascular access, has been one of the hardest journeys of love, patience, and acceptance I have ever been through. That said, living with vascular access and going through treatment has given me the freedom to live my life and has allowed me to participate in many “normal” activities that I would most likely not be able to do otherwise!
Maintaining those vascular access devices however, has been hugely important to maintaining that freedom. I remember one particularly traumatizing instance when I had my second PICC. I did not have my PICCPerfect on, and an inexperienced home care nurse came to change my dressing.The nurse pulled out my PICC by 5cm, which ultimately led to a trip to the ER for a line exchange. This was not only a major inconvenience, but it was really upsetting and scary as well. Now that I know about Mastisol® Liquid Adhesive, I use it for extra protection. Safe dressing securement has been such an important part of feeling confident during my treatment journey.
Now that I have a port, it is freeing to not have to worry about mispositioning in that way. But now dressing removal and detachment has been a real focus for me. Before I discovered Detachol® Adhesive Remover, dressing changes were a nightmare because of my skin’s reaction to the dressing adhesive left on my skin.
Now with a gentle rub of the fun little swab sticks, my skin feels (almost!) back to normal in 24 hours instead of red for days. My home care nurse was so impressed by the change. It’s wonderful to be able to complete treatment and get back to life sooner, not having to constantly itch my skin and coordinate my outfits to make sure it hides the inflammation on my chest where my dressing was (which previously took almost a week to calm down!).
What’s one thing you wish people understood about life as a patient?
I think healthcare sometimes forgets that at the end of the day, patients are the consumers. Patients have the right to choose the products in and on their bodies. We need to include patients in all aspects of healthcare and empower them to make their own choices about their bodies.
For more information about superior device securement with Mastisol® Liquid Adhesive and safe dressing removal with Detachol® Adhesive Remover please contact your sales consultant or Eloquest Healthcare®, Inc., call 1‐877‐433‐7626 or visit www.eloquesthealthcare.com.
This piece was created for Eloquest Healthcare® in partnership with Mighty Well.