Table 1.

Selected quotations from hidradenitis suppurativa (HS) patient leaders

Barrier	Quotations
Knowledge
Lack of knowledge among healthcare professionals	It took years to be diagnosed with HS
	It’s so rare to see a doctor who knows about HS
	All appointments begin with diet, smoking, weight, hygiene
Access
Limited access to HS specialists	My PCP said that it isn’t his job to help me
	Getting in to see a dermatologist is like getting to see the president
	Our plastic surgeon said he doesn’t make money working with HS patients. HS is a money-losing condition
Limited access to mental health resources	It’s very difficult to get treatment or support even if you have a doctor
	Some providers do send timely mental health referrals
	Plenty of people online are considering suicide due to the pain
Communication
Poor communication	Doctors have problems with listening
	[Doctors] think they are experts and are unwilling to listen to our preferences
Lack of empathy and respect	You already feel bad enough about yourself. You don’t want to be judged immediately
	Do not discuss weight while people are nude
	My teenage daughter was told she smelled
	[Doctors] are dehumanizing you
	[Doctors] treat you like a drug seeker
Trust
Distrust of the medical community	Distrust of doctors is rampant
	People say I don’t trust the medical field, therefore they are going to hide it, they are going to suffer
Patient experience of HS
Experience of living with HS	Pain is the most important factor
	It became a nightmare. I was suffering physically and emotionally
	For years I thought I had an unknown STD
	My two sisters had the same thing and didn’t speak about HS because they were too embarrassed. It’s an isolating and debilitating disease
	My daughter couldn’t graduate high school because of a gym requirement
	I had to advocate for myself
	Everything deteriorates
Role of social media support groups	When people stop seeing doctors, they turn to [social media]
	Every day we get 20 requests [to join our social media group]. I had no idea there was anybody else, is what they think
	They are my family. You are me, we are going through the same things

PCP, primary care physician; STD, sexually transmitted disease.