This is what I live with. It is unknown to most people, and we need to raise awareness.
I have this disease. I live and struggle with it everyday. I cry about it almost every night. It is a never ending battle that rages on in my skin, in my head, and in my quickly weakening spirit. You should know exactly what I'm talking about... because that is how we spread awareness.
What is HIDRADENITIS?
This is an uncommon disorder of unknown cause in which boil-like lumps develop under the arms, groin and under the breasts. The lumps can also be found in other areas, such as behind the ears, in the crease of the buttocks and around the genitals, top of the head or even on your face. It is not contagious and cannot be caught. The condition is very slightly more common in women when the affected area is the groin, but there is no difference in occurrences between men and women when infection is under the arms. In a study undertaken in Copenhagen, it was discovered that the disorder may not be as rare as imagined, but that patients are simply not diagnosed with HIDRADENITIS. They suggested that there was a 1% chance of developing HIDRADENITIS in any given period of 12 months (i.e. In a group of 100 randomly picked people, one person will develop HIDRADENITIS within 12 months). The disease involves the apocrine and eccrine (sweat) glands, the sebaceous (oil producing) glands and the hair follicles, although there is some disagreement as to whether the infection starts in the follicles and spreads to the sweat and oil glands, or vice-versa. There are often outbreaks linked with periods in women. It is thought that HIDRADENITIS is dependent on the androgen sex hormones. However, the levels of androgens in HIDRADENITIS sufferers are usually the same as in non-sufferers, although other disorders linked to androgens, such as acne, are commonly found with HIDRADENITIS. The disease often shows itself during puberty, but has appeared as late as post-menopausal age. A bacterium called Streptococcus milleri appears to be a common organism infecting lumps, and it is suggested that a common bacterium that lives on the skin and in the nose, Staphylococcus aureus, plays a part in the early stages of the development of the disease. Bacterial infection was only found in about 50% of swabs taken of the swellings caused by HIDRADENITIS. The tendency to develop HIDRADENITIS is hereditary, but this does not mean that your children or other relatives will definitely develop HIDRADENITIS.
Our Spirits
HIDRADENITIS SUPPURATIVA is not just a disease of the skin, it is a disease of the spirit. For a person with HIDRADENITIS SUPPURATIVA the emotional ramifications are three fold. First and foremost is self concept. For a person with HS, the body becomes something that is disconnected, shameful, painful, and hated. The HIDRADENITIS SUPPURATIVA sufferer feels like their own body has betrayed them and become the enemy. Secondly, the HIDRADENITIS SUPPURATIVA sufferer’s personal relationships with family, mates, and friends is severely effected. Routine housework, social activities, and career become increasingly difficult to perform without excruciating pain. We live in mortal fear that an open lesion might drain through the dressing and stain our clothes, or worse yet, someone might ‘smell’ the drainage. Multiple daily baths and strenuous hygiene does nothing to curb our fears or boost our self esteem. Intimate relationships become a nightmare. Because of the sexualized regions that are affected by HIDRADENITIS SUPPURATIVA: dating, marriage, and physical intimacy become things to be feared and avoided. How can a person who hates their own body share that body with another? The shame and pain are too great! We ask ourselves, "What will they think? How will I live with the look of disgust in my loved one’s eyes? Who would ever want a scared, broken body covered in open lesions in the exact places that are supposed to be sensual and erotic?" Finally, the most noticeable and likely result of these emotional issues is depression. Dealing with this disease and the sad lack of viable treatments IS depressing! Physically, our bodies are stressed, in pain, and continuously fighting off infection. Emotionally we are stressed, in pain, and continuously fighting off depression. It becomes very easy to isolate ourselves, hide the lesions and the pain, and simply retreat into a world of lonely agony.
Facts and Curiosities
The following facts and curiosities are based on research of HIDRADENITIS SUPPURATIVA, medical documentation, personal experience by members of the H.I.D.E. Support Group and other medical information. You are encouraged to print this page and take it with you to your next doctor's appointment.
* HIDRADENITIS SUPPURATIVA is also known as Verneuil's Disease.
*HIDRADENITIS SUPPURATIVA is often misdiagnosed or treated as isolated incidences of acute abcesses. (See Fox-Fordyce, Dowling-Degos and Hailey-Hailey diseases.)
*HIDRADENITIS SUPPURATIVA can occur as early as 10 years of age and as late as 55 or more years of age. It most commonly shows up at puberty, during or after pregnancy, or after menopause in women.
*There is no known cause.
*There is no known cure. The most probable cause is genetic predisposition.
* HIDRADENITIS SUPPURATIVA is NOT caused by poor hygiene or obesity. (Sometimes, only exacerbated.)
*HIDRADENITIS SUPPURATIVA is not communicable to sexual partners. People with HIDRADENITIS SUPPURATIVA are prone to varying degrees of depression.
*HIDRADENITIS SUPPURATIVA most commonly affects the following areas where apocrine glands are concentrated: Axillae (armpits), periareolar (around the nipples), intermammary zones (breast region), pubes (pubic region), infraumbilical midline (beneath the belly-button), gluteal folds (crease of the buttocks), and genitofemoral areas (top of the thigh in genital area).
*HIDRADENITIS SUPPURATIVA is more common in women than men, although sex differences for occurrence in the armpit is negligible.
*Some HIDRADENITIS SUPPURATIVA patients do go into remissions which can last anywhere from several months to several years.
*HIDRADENITIS SUPPURATIVA is a "disability" which does not allow sufferers to perform normal work functions in many cases and has some drastic effects on normal social activities.
*HIDRADENITIS SUPPURATIVA can be fatal. All cases should be reviewed by competent dermatologists.
*Some female sufferers report and increase in disease activity shortly before or during menses.
*Some of the associated diseases (not necessarily common) with HIDRADENITIS SUPPURATIVA are Crohn's or IBS (Irritable Bowel Syndrome), Down's, certain forms of arthritis (Spondyloarthropathies/seronegative arthritis/reactive arthritis), Graves or Hashimoto's Thyroid, Sjogren's Syndrome and Herpes.
*The most common infector is staph aureus (commonly found on everyone's skin).
*Hidradenitis SUPPURATIVA sufferers for psycho-social reasons may not report their disease and are less likely than the general populace to seek second opinions.
*HIDRADENITIS SUPPURATIVA activity is directly related to stress.
*Some studies indicate that HIDRADENITIS SUPPURATIVA may be as common as 1% of the population.
HIDRADENITIS SUPPURATIVA STAGES
Stage 1.
Solitary or multiple abscess in isolated incidents, no scarring or sinus tract involvement. The possibility of remission for long periods is high, at this stage HS is not usually diagnosed, this being mainly due to the rarity of the disease it is the last thing a doctor assumes. Mainly treated by lancing or 'drawing' with magnesium sulphate paste and the use of antibiotic's.
Stage 2.
Multiple or Single abscess in multiple regions, spreading throughout the pubic area's with possible sinus tract formation occurring. Long period's of remission are rare, it is this stage where most diagnosis are made. At this stage doctor's usually refer patients to a surgeon for total excision of the infected area. Surgery in the majority of cases gives only temporary relief.
Stage 3.
Multiple abscess throughout the pubic area's. Widely spread scarring from previous abscess involvement, the full formation of sinus tract's giving rise to constantly weeping from wounds. Complete cure at this stage is extremely unlikely, surgery will be suggested. Some relief would be given from this, however the extent of surgery required will affect the mobility of the sufferer.
HIDRADENITIS SUPPURATIVA DEFINITION
1. Definition:
HIDRADENITIS is a chronic disease of the scent or apocrine glands which causes chronic scarring and pus formation of the axillae and groin areas. It is similar to acne which is a disease of the sebaceous glands. This condition is slightly more common in African-Americans and women. HIDRADENITIS usually starts as one or more red, tender, swellings in the groin or axilla. Over a period of hours to days the lesions enlarge and often open to the skin surface draining clear to yellow fluid. The involved area then heals with scarring. The condition usually continues for years with periods of flare and remission.
2. Causes and Associations:
For unknown reasons, people with HIDRADENITIS develop plugging or clogging of their apocrine glands. This leads to bacterial infection which can produce pain and odor.
HIDRADENITIS is made worse by being overweight, however this condition is not caused by obesity.
HIDRADENITIS is more common in people who have had acne.
HIDRADENITIS may become worse under stress.
HIDRADENITIS is not caused by poor hygiene.
3. Treatment:
Topical antibiotics (applied to the skin) are the treatment of choice. Systemic (by mouth) antibiotics are at times necessary when the condition is flaring or when a patient has a severe case.
Tight-fitting clothing is to be strictly avoided.
Dirt does not cause HIDRADENITIS. The involved areas should be cleaned daily using an antibacterial soap, such as the liquid form of Lever 2000. Some patients have found that the liquid form of Lever 2000, applied to the involved areas as a lotion after bathing, can help reduce the odor associated with this condition.
There is no medical cure for HIDRADENITIS. HIDRADENITIS can be controlled, but not cured. Sometimes surgery is required to drain infected areas or to remove scarred tissue or even large areas of skin.
Weight loss will improve but not cure HIDRADENITIS.
IMPORTANT!-If you have HIDRADENITIS, or think you may have it, then you should be under the close supervision of a qualified medical professional- timely intervention and attempts at control of this disease may improve your quality of life later in the disease cycle. Not everyone who has HIDRADENITIS will see it evolve into what we consider to be extreme or severe forms of this disease, but the chances of complications are greatly reduced by quality care early in the progression of this disorder.
