At 22 years old, Dan Pezzetta is carving out a name for himself in the chronic illness sphere. When he was born, Dan was diagnosed with aortic stenosis. Although intervention occurred immediately upon birth and continued throughout early childhood, Dan has long grappled with the impact of living life with a chronic illness and invisible disability. This has made him increasingly passionate about advocating for those within this community and ensuring that those with chronic illnesses and rare diseases are given the opportunity to raise their voices.

Throughout his advocacy, Dan has engaged in numerous speaking opportunities, with credits including MIT and Harvard Medical School. At Harvard, he spoke about the importance of young adult representation for the Oxalosis & Hyperoxaluria Foundation. In 2020, when he spoke during Rare Disease Week on Capitol Hill, someone approached him. They explained that they had seen Dan speak at Harvard and had been incredibly inspired by his story. He shares:

It blew me away to really understand the impact I was having. I knew I was on the right path, and I wanted to continue my mission of helping lots of people – who will then go on to help lots of people.

But that same year, Dan – and the rest of the world – came face-to-face with a frightening barrier: the COVID-19 pandemic. Feeling isolated from others, and frustrated by ableist statements like “only the sick and elderly will die,” Dan decided to step up and become the representation he so often hoped to see in this community. So he wrote “Disposed: A Story of Chronic Illness During the COVID-19 Pandemic.”

Recently, Dan and I sat down to discuss his experience with aortic stenosis, the process of writing “Disposed,” and why we as a society need to change the way we view people with disabilities.

Dan’s Story

Following his aortic stenosis diagnosis, Dan faced a variety of symptoms growing up. These included heart palpitations, exercise intolerance, and hypertension – which he explains has always been his most severe symptom. But he explains that, particularly in middle and high school, his peers didn’t really understand what he was going through. Dan shares:

I have an invisible illness, an invisible disability. There was a lot of pushback because you can pass off a lot of how I act or my symptoms, like poor stamina or fatigue, as other issues that aren’t associated with a condition. You wouldn’t know I had surgery scars unless I took my shirt off, which I didn’t feel comfortable with for a while. So my journey with chronic illness is also my journey towards body acceptance and body confidence. It was an evolution that I had to work on during my late teens and young adult phase.

When he reached college, Dan became more open about speaking about his condition and experiences. At first, he was unsure how people would react – what questions they would ask or how he would explain it. But he found that:

When you talk about it, a lot of people have questions, and I think those questions are important. It was a wonderful feeling of acceptance and having people ask how they could help or what they could do to assist.

Dan graduated from college in 2020 and is currently pursuing a graduate degree at George Washington University. He wants to work in policy-making and legislation. Right now, he also enjoys working as an outdoor educator, where he teaches children skills like team-building, gardening, archery, and survivalism.

About Aortic Stenosis

The American Heart Association explains that aortic stenosis is a serious valve disease problem characterized by the narrowing of the aortic valve opening:

Aortic stenosis restricts the blood flow from the left ventricle to the aorta and may also affect the pressure in the left atrium.

This condition may develop in older individuals due to damage caused by calcium or scarring. In infants and younger individuals, aortic stenosis usually results from a congenital heart defect known as a bicuspid aortic valve, or a valve opening which fails to grow with the heart. Symptoms in infants and young adults include poor or inadequate feeding, breathing difficulties, failure to thrive, and fatigue which worsens upon exertion.

In childhood, Dan underwent the Ross procedure, which replaces the aortic valve with a pulmonary valve. Now, he undergoes yearly MRIs and echocardiograms, and also takes medication to manage his hypertension. Dan explains:

There are limitations on what I can do every day. Some days I can do a lot and others I’m in a lot of pain and can’t get out of bed. The journey towards accepting my condition was always rough, but I am constantly working to find and reaffirm that confidence within myself.

Becoming a Part of POP!

When the COVID-19 pandemic began, Dan felt increasingly isolated from the rare disease and chronic illness communities. He shares:

That year of my life was the hardest year ever – such a dark time.

He began searching for areas where he could still work and make an impact. One of the people he reached out to was Emily, the Founder of Pissed Off Patients (POP!). Dan and Emily had known each other for a bit of time; both had volunteered with the EveryLife Foundation and YARR. So when Dan found out that Emily was searching for POP! volunteers, he inquired about joining the team. Dan now volunteers with POP! in a social media capacity, planning and creating content. He says:

It was beautiful to get back into this type of work because I felt like I was reconnecting with this community. Being a part of POP! is so wonderful because it helps so many people and brings awareness to an important issue – medical PTSD – that I don’t think is being talked about enough.

POP! offers resources regarding medical trauma and medical PTSD, as well as runs meetings and discussion groups for patients with rare diseases and chronic illnesses to discuss their experiences. In Dan’s words, medical PTSD is:

Trauma that stems from either someone in the medical field or within your personal circle that is denying the existence of your symptoms, condition, or how you feel, or trauma from someone gaslighting your experience and making you question yourself and how you feel. Medical PTSD is an erasure of your condition and your existence, because your condition plays a part in who you are as a person and to deny that or to change the narrative can cause trauma.

Dan explains that while many patients have had bad experiences within the medical realm, many don’t know how to articulate or explain these experiences. For example, he shares, it can be difficult to hear phrases like “Oh, you’re too young to be sick!” Women’s symptoms are often passed off as stress or hormones. Dan also points out that patients of color and poor patients also face extreme barriers to care:

It is so unfortunate that this is the case, and it needs to be talked about. We need to acknowledge that while no one experience is the same, we all have this collective trauma. I love seeing people come to POP! so that we are able to help our community heal together.

Join in for Part 2 of our interview, where we discuss how Dan conceptualized “Disposed: A Story of Chronic Illness During the COVID-19 Pandemic,” the writing process, how to get involved in advocacy, and advice for those with rare diseases and chronic illness.