"HS is considered a rare skin condition with no cure or dependable treatment."

In my books All I Want for Christmas and All I Want is You I introduce you to Mary Christmas who suffers from an illness called Hidradenitis Suppurativa.  I too suffer from this illness and Mary's plights and insecurities have been my own.  It was a very difficult book for me to write and in many ways therapeutic.   

I know that a lot of my readers, along with family and friends are either concern, confused, or curious as to the illness I suffer with and I have tried to explain it several times in many ways to many people over the years and frankly I'm tired of it. Some get it and some don't and because of it they sometimes say things that hurt my feelings or make me angry without realizing it. So I'm going to put it all out there no matter how painful and embarrassing it is for me to discuss it openly, because it's not pretty.

With this said, I leave it up to you to care or not care enough to read this posting and gain the extended knowledge of my illness that I've had since I was 17. This is the only way for you to truly understand and give me the love, support and understanding as a person fighting a chronic painful battle.

If you want pictures of the effect HS has on a body. I cannot post them here as some people will consider them offensive. If you have a weak stomach and easily take offense do not Google the pictures for it can be extremely graphic.

I am fighting for awareness and if these images and my being completely open to telling everyone what I have contribute to that awareness then good. So here we go.

What is Hidradenitis Suppurativa we like to refer to as HS in every day terms?

Hidradenitis Suppurativa or as we call it HS is considered a rare skin condition with no cure or dependable treatment. It can also be called Acne Inversa and Verneuil's disease. It is not acne nor is it related to acne so although family and friends try to be helpful by suggesting acne treatments they do not work on HS.

For most of us nothing works to control the disease. I wish to also make it clear that HS is not contagious.

HS affects the hair follicles causing them to plug. As a result sweat and other bodily fluids build up and form pockets of fluid under the skin. These pockets or lesions can be the size of a pea or as large as a grapefruit. They cause extreme pain and pressure often pressing on nerves. These grow larger until they burst or are lanced and drained. They tend to reform over and over again in the same areas causing a build up of scar tissue. They also tunnel under the skin often connecting different lesions. It is common for a person with HS to push on one area and have drainage appear in another.

This condition is extremely painful having been listed as one of the top 10 most painful conditions. It restricts a persons mobility, destroys their confidence and makes them hermits. The fluid that is draining often smells quite badly. People with HS tend to have multiple showers a day and yet they still feel unclean and fear people can smell them. I've asked friends if they can smell me and no one has, but because I must care for myself I think it lives in my nostrils and in my head I fear that is the case.

Many people go years without seeing a doctor because they are embarrassed. Since HS tends to affect the most intimate parts of a persons body speaking out is often difficult to do. Often when a person finally does go to a doctor they are misdiagnosed, told it's ingrown hairs, they are not clean enough. they are shaving wrong, it's acne, etc etc etc. This only contributes to making them feel worse and becoming more and more of a hermit.

The disease continues to progress and spreading to different areas of the body. Common areas for HS to develop are the underarms, bust, buttocks, groin, base of the neck. It can also develop on the back, stomach, face, top of the head and anywhere that hair follicles exist.

Current methods of treatment include years of antibiotics which may work for a little while but frequently do nothing except harm the patient with all their side effects. Accutane and other retinoids used for acne are often prescribed. Again these do very little. Since HS is possibly an autoimmune condition doctors are now prescribing humira and remicade. There has been some success with these medications but they are extremely expensive and out of the reach of the average person cost wise especially since most are disabled and unable to work by the time these drugs are needed. Also once you stop taking them the disease comes back worse and after time they do loose their effectiveness. Surgery is often used as a last resort with large areas of skin removed and either grafts used or the area allowed to heal with skin regrowing slowly. Even then the disease will return sometimes while the person is healing.

Recent studies have uncovered 3 genes involved in Familial HS. This also hints at the fact that there may be multiple types of HS. There is just not enough research being done mostly because it is not profitable for the large drug companies to do so.

People with HS become easily depressed. Don't let the doctors fool you. HS can kill. People have committed suicide from despair, having reached a point where they cannot take the pain and lack of understanding anymore. We are also highly susceptible to infections including cellulitus which can kill. Lastly we face a much higher risk of some forms of skin cancer because of the damage being done to our skin. I personally know of several people with HS who have died of cancer.

Well that is as simple as I can put it. I hope you now understand. If you wish to know more about HS google HS or find a blog. The information is out there. I caution you to watch the dates of any articles you read as there is a lot of misinformation out there even being put out by the medical community.

Thank you for taking the time to become HS Aware.
 

HS Can Affect the Whole Body

HS may be a skin condition but it can affect much more than just the skin... It can affect the whole body. Besides for skin lesions and the area's sweat gland involvement, severe skin lesions can turn septic or cellulitic. A person can develop nerve damage from compression lesions. They may have difficulty moving from the effect of scar tissue and existing lesions and pain. It may cause depression, anxiety and mood disorders in a patient shut in a lot from recurrent flares. And that's only the beginning....
Spread the word about HS so that others will start thinking too....

Sometimes Certain Triggers can Make it Worse...

HS is an inflammatory condition with multiple triggers. Like any chronic condition, everyone has his or her own set of triggers that set it off. Since Hidradenitis Suppurativa often is found in areas of friction and apocrine sweat glands such as underarms and thighs, sweat is naturally a big trigger for many. Naturally, vigorous exercise may sometimes pose a problem. Stress is common, as is any stress on the body such as illness. Hormones affect HS - menstruation, menopause. Many even find foods affect it. Know your triggers and HS can sometimes be contained. Contained but not cured.
So why sweat what we can't fix?
Spread the word about HS... Perhaps one day soon we can hear better news.
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