You Just Got Diagnosed
with HS.
It is okay to feel overwhelmed. A diagnosis of hidradenitis suppurativa can bring relief (finally, a name for this), confusion, and fear all at once. This guide is designed to walk you through the five most important things to do next, in the right order.
Understand What HS Is
Start here - before anything else
Hidradenitis Suppurativa is a chronic inflammatory skin condition, not an infection, and not caused by poor hygiene. Understanding what HS actually is will help you have better conversations with your doctor, reduce shame, and make sense of your symptoms.
HS affects approximately 1 in 100 people. You are far from alone.
Learn Your Hurley Stage
Staging guides your treatment options
HS is classified into three stages (Hurley I, II, III) based on the severity and extent of your disease. Your stage is not a life sentence - it can change with treatment. But knowing your stage helps you understand which treatments are appropriate and what to expect.
Ask your dermatologist to stage your HS at your next appointment. It takes less than 5 minutes and changes everything about your treatment plan.
Explore Your Treatment Options
There is more available than you may think
HS treatment has advanced significantly in the past decade. From topical antibiotics and oral medications to FDA-approved biologics and surgical options, there are more tools available than ever. Start by understanding the full landscape so you can advocate for yourself.
Adalimumab (Humira) was the first FDA-approved biologic for HS in 2015. Secukinumab and bimekizumab have since been approved, giving patients more options than ever.
Build Your Care Team
The right specialists make all the difference
HS is best managed by a multidisciplinary team. A dermatologist who specializes in HS is your most important ally. Depending on your situation, you may also benefit from a pain specialist, mental health professional, nutritionist, or surgeon. Knowing who to ask for and what to say will help you get better care faster.
Find Your Community
Connection is part of healing
Living with HS can be isolating. The psychological burden of chronic pain, visible lesions, and social withdrawal is real and significant. Connecting with others who truly understand what you are going through can be transformative. You do not have to figure this out alone.
Studies show that peer support significantly improves quality of life and treatment adherence for people with chronic skin conditions.
6 Things to Do This Week
These practical steps will immediately improve your care and your ability to advocate for yourself.
Take photos of your lesions during a flare to show your doctor
Write down all affected body areas before your appointment
Ask your doctor to formally stage your HS using the Hurley system
Request a referral to a dermatologist who specializes in HS if you do not already have one
Start a symptom journal to track flare patterns and potential triggers
Join at least one HS patient community online
Questions from Newly Diagnosed Patients
I was just diagnosed with HS. What should I do first?
Start by reading about what HS actually is and how it is classified. Then bring that knowledge to your next doctor's appointment and ask to have your disease formally staged. Staging determines which treatments are appropriate for you. The five steps on this page are designed to walk you through exactly this process.
Will HS get worse over time?
HS can progress if left untreated, but effective treatment significantly reduces the risk of progression. Many patients achieve long periods of remission with the right combination of medical treatment and lifestyle adjustments. Early, aggressive treatment is associated with better long-term outcomes.
Should I see a dermatologist or a GP for HS?
Both can play a role, but a dermatologist who specializes in HS will provide the most effective care. If your GP is managing your HS, ask for a referral to a dermatologist, especially if your current treatment is not working or your disease is progressing.
Is there anything I can do right now to reduce flares?
Yes. Several lifestyle changes have evidence behind them: wearing loose-fitting, breathable clothing; avoiding shaving affected areas; following a low-glycemic or dairy-free diet; quitting smoking if you smoke; and managing your weight if that is relevant to your situation. These changes will not replace medical treatment but can meaningfully reduce flare frequency for many patients.
Your HS Education Path
These three guides are the most important reading for anyone newly diagnosed with HS. Work through them in order to build a solid foundation.
Early Warning Signs of HS
Learn the 7 early signs that distinguish HS from ordinary skin conditions, so you can recognize what your body is telling you and act sooner.
Read guideHS vs Boils: What Is the Difference?
A clear side-by-side comparison of HS and ordinary boils. Understanding the difference helps you explain your condition to others and advocate for proper care.
Read guideConditions Mistaken for HS
HS is misdiagnosed on average for 7 years. Learn the 10 conditions most often confused with HS so you can recognize misdiagnosis and push for the right care.
Read guideYou Do Not Have to Figure This Out Alone
Many people are navigating HS every day. Our community is a safe, supportive space to ask questions, share experiences, and find people who truly understand.
Continue exploring
Medical References
- [1]Jemec GBE. Hidradenitis suppurativa. N Engl J Med. 2012;366(2):158-164. PubMed
- [2]Goldburg SR, Strober BE, Payette MJ. Hidradenitis suppurativa: epidemiology, clinical presentation, and pathogenesis. J Am Acad Dermatol. 2020;82(5):1045-1058. PubMed
- [3]Alikhan A, et al. North American clinical management guidelines for hidradenitis suppurativa. J Am Acad Dermatol. 2019;81(1):76-90. PubMed
- [4]Kimball AB, et al. Two phase 3 trials of adalimumab for hidradenitis suppurativa. N Engl J Med. 2016;375(5):422-434. PubMed