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Does your doctor know about hidradenitis suppurativa?

Did you know that it takes on average 7 years to be diagnosed with HS? During these 7 years, HS symptoms are often misdiagnosed and therefore mistreated. In a lot of these cases when the person with HS goes to the doctor initially, they are typically at stage 1 or 2. By the time they have found a doctor who treats Hidradenitis Suppurativa or specialist who can diagnose HS,  it may have progressed to irreversible skin damage.

So, in an effort to help raise awareness and get faster a diagnosis – here are the 5 things we wish the doctor knew about Hidradenitis Suppurativa.

The two questions for the doctor that could help diagnosis

How to diagnose Hidradenitis Suppurativa in 2 questions

There are two simple enough questions that can be asked which could help get a diagnosis. These are:

  1. Have they experienced an outbreak of boils in the last 6 months?
  2. Were there multiple boils and were they located in more than one area?

If the patient answered yes to both of the questions and the boils are presenting the common areas highlighted above (underarm, under the breast, groin and thighs) this may be Hidradenitis Suppurativa.

Atypical HS is a thing and we wish the doctor knew about it

The most common areas affected by HS are the armpit, groin, under the breath, thigh and buttock. But these are not the only areas it can affect.

HS can also appear on the head, neck, ears, arms, hand, legs, feet and back. Sometimes if HS presents in these areas’ doctors can be hesitant to diagnose it because it’s not the ‘typical common area’ for HS to appear. Therefore, it is important for HCP’s to be aware of the atypical presentations.

Losing weight and quitting smoking isn’t always the answer

Girl sitting against wall

If you have watched or read any content about HS, you will find a lot of the time, they say HS occurs mainly in overweight smokers and to combat this,  patients should lose weight and stop smoking.

Studies do show a high percentage of HS patients are smokers and/or are overweight, and that losing weight and smoking cessation can help reduce HS symptoms. However, this is not the cause of HS and patients should not be made to feel like it is their fault that they have HS.  The unfortunate truth is no one knows the cause of HS.

It’s not just physical

HS can affect you mentally as well as physically Living with HS can be draining. People with HS are trying to manage the physical aspects of the disease, like the constant pain and wound care, whilst also trying to live a normal life. It can be very difficult to manage everyday tasks with a restricted range of movement, or medication side effects. People with HS are at higher risk of developing anxiety, depression and becoming isolated due to the stigma of their disease.

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While trying to get a diagnosis a lot of HS warriors are told they aren’t washing enough. This can be very embarrassing and cause unnecessary self-image issues, but most imporatnly, it simply isn’t true. HS has no proven links to self-care. You can be the cleanest person in the world and still develop HS.

So there you have it, the 5 things we wish our doctors knew about HS. If we all work together to spread awareness of HS then hopefully the next time someone presents with symptoms they will be able to find a doctor who treats Hidradenitis Suppurativa faster. Faster diagnosis is the key.





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