First off, let me say that I am going to refer to Hidradenitis Suppurativa as simply ‘HS’ in most parts of this blog, as saying the entire thing each time I mention it would just be way too long.
So lets get to it.
If you, like me, have Hidradenitis Suppurativa, chances are it took FOREVER for you to get your condition correctly diagnosed by a doctor.
The Mayo Clinic website defines HS as - ‘Hidradenitis suppurativa (hi-drad-uh-NI-tis sup-u-ra-TI-va) is a chronic skin inflammation marked by the presence of blackheads and one or more red, tender bumps (lesions). The lesions often enlarge, break open and drain pus. Scarring may result after several recurrences.
Considered a severe form of acne (acne inversa), hidradenitis suppurativa occurs deep in the skin around oil (sebaceous) glands and hair follicles. The parts of the body affected — the groin and armpits, for example — are also the main locations of apocrine sweat glands.
Hidradenitis suppurativa tends to start after puberty, persist for years and worsen over time. Early diagnosis and treatment of hidradenitis suppurativa can help manage the symptoms and prevent new lesions from developing.’
While the Mayo Clinic makes some good basic points, it oversimplifies the condition of HS. First off, not nearly enough research has been done on this disease. Due to this, the following occur:
a. Most doctors are unable to even correctly diagnose it.
b. All doctors say ‘there is no cure - you can just manage it’.
Point (a) occurs due to lack of awareness on the part of the doctors. Point (b) occurs simply because NOT ENOUGH RESEARCH has been done on HS.
Those of you who suffer from it, will know what a painful, debilitating, life-drowning horrible disease this is. Side effects of HS are depression, anger, mood swings and a host of other problems. Physical pain and extreme discomfort is ofcourse the biggest problem with HS.
I apologize for the rather rambling introduction I have made. But let me just go ahead and outline what exactly I am going to cover in this blog:
- My history of Hidradenitis Suppurativa.
- The medications I have taken for it, whether they have worked.
- How HS has affected my life, both mentally, emotionally and ofcourse, physically.
- Research I am putting together on HS.
Stay tuned. If you too have HS or are interested in contributing to this blog with your experiences of HS, please email me at firstname.lastname@example.org.
The more people who contribute to this, the better for all of us!