HS is a complex disease that we’re still learning about, in terms of the cause, associated conditions and treatments. More information has been gained over the past few years as new therapies are investigated. There are some physicians who are not well-versed in this area and may not have an interest in treating HS. Don’t let this discourage you. There are physicians who specialize in this condition, and you can talk to your primary care doctor to try to help find one in your area.
It is important to seek medical care if you think you have HS. There are physicians who can help you with this, so don’t give up!
When you see your doctor, it is important to always be prepared for the visit by bringing a list of your current medications, details on the timing of the lesions and which treatment has already been tried. Additionally, you may want to prepare a list of questions in advance or ask if there if something you don’t understand.
The first important factor in the care of a patient with HS is to establish the diagnosis. Patients cannot be managed properly unless a proper diagnosis has been made.
The second is to be able to direct patients to a dermatologist who has an interest in following HS patients.
The third is to recognize that this is a challenging disease and that there have been limited options to offer HS patients. Up until recently, it has received little attention in the medical community. Fortunately, this is changing.
During your first visit, your doctor will try to obtain all the relevant information to assess your disease and to design a management plan. Some of the information that might require prior preparation includes:
a) Frequency and length of flare-ups
b) Current and previous medications for HS: names, doses, duration, and response
c) Surgeries: type of surgery, date, result
d) Co-morbidities and an up-to-date medication list
The best way for patients to prepare for their first appointment, or any following appointment, is to write down a list of their most pressing concerns and questions. It is important to understand that it is a chronic condition that cannot be resolved in one visit and will require proper follow-up.