Hidradenitis Suppurativa: the cure is out there ... help us find it

  • Author:
    n/a
  • Send To:
    see the petition
  • Sponsored By:
    Hidradenitis Community Worldwide
  • More Info at:
Welcome
The written text is long but so very important. Please read all the way through. The comments in the signature section also makes for interesting reading.

Target:
This petition is written for anyone who is interested and willing to help our Hidradenitis cause, with the hope of developing resources and attracting the attention of but not limited to the following:
> The general medical profession
> Medical and research Universities
> Research facilities
> Pharmaceutical companies
> Media:
* Television
* Radio
* Newspaper
* Magazines
* Media Personalities
> All areas of Government:
* Politicians
* applicable Departments
* applicable Agencies
> Businesses and companies (donations through HS-USA; address below)

Purpose:
There is very little known about the disease Hidradenitis Suppurativa (HS). The purpose of this petition is to raise awareness, educate and solicit research and the funds needed for research, with the ultimate goal of finding the cause and cure for HS.

At this time, there is no known cause or cure for Hidradenitis Suppurativa. There are many theories, none proven, including:
> Genes
> Hormones
> Androgens
> Stress
> Toxins
> Autoimmune disease links
> and many other theories, but none proven at this time

The best definition for HS at this time:
HS is also known as 'Acne Inversa.' HS is a non-contagious, recurrent skin disease usually found in inverse areas of the body, or those places where there is skin-to-skin contact (armpits, groin, breasts, buttocks, etc.) and around hair follicles where apocrine sweat glands are located. HS is characterized by a progression from boil-like, cyst-type or abscess-like lesions to non-inflamed, hard lumps to painful, rounded deep-seated inflamed lesions with subsequent scarring and chronic seepage (suppuration --- hence the name).

These hard lumps occur under the skin and may be as large as baseballs in some people. They are very painful to the touch and may persist for years with occasional to frequent periods of inflammation. Inflamed lumps lead to extensive draining and the development of sinus tracts, or tunnels under the skin, which heal slowly or not at all and can lead to further inflammation and lumps; bacterial infections are possible at these sites. The HS sites can be painful and the pain can occur 24 hours a day, 7 days a week for HS sufferers during flareups. The sites can have drainage, which may have a foul odor.

The pain, the drainage and the odor can often limit activities and cause depression so that people often do not or cannot work, or even go out in public. Most often, HS goes undiagnosed or misdiagnosed for years. The patient ends up in a very expensive and exhausting futile search for help. So not only is the patient dealing with a painful problem they are following a trail of useless treatments. The pain pushes the patient to seek relief, only to be met with failure. The stress from the building sense of hopelessness exacerbating the pain, depleting funds and ultimately can result in depression. In addition to depression, there are many other physical and psychological impacts and effects HS can have on a person. You can read a few personal HS experiences at:
http://www.hs-usa.org/living_with_hs/impact_studies.htm

What we want you to know:
> HS is a horrible disease. HS not only effects you physically but can also affect you mentally. Many people with HS also have varying degrees of depression. Your self-image can be affected. It can also cause problems with family, friends, relationships and work.
> No known cause or cure
> No research being done
> Classified as a rare disease but the current numbers say otherwise. The most generally accepted statistic is now 1 in 300. A rare disorder usually means 1 in 10,000.
> HS is often undiagnosed for many years
> HS is often misdiagnosed; only a relatively few physicians and medical professionals are able to recognize HS, and even when they do (continued in next statement)
> HS is often mistreated; the suggested treatments are often ineffective and are even sometimes harmful; all too often, long term antibiotic use is the most used plan of action wrong very bad. Surgery does not cure HS. Surgery can have its own complications, which can be worse than the HS. All too often, HS returns to the surgical scar areas or moves to another area of the body
> Physicians are often misinformed about HS. There is a lot of misinformation and untruths about HS, including a lot of absurd and ignorant ideas. Receiving misinformation can have detrimental effects on some patients, up to and including suicide.
> When cultured, HS drainage is most often sterile (so why are antibiotics prescribed or expected to help?)
> HS is not contagious
> HS is not caused by smoking
> HS is not caused by weight
> HS is not caused by lack of hygiene
> HS is not a womans disease; HS is not a black persons disease; HS is not a poor persons disease. HS can happen to any person, regardless of gender, age or ethnic background.
> Children can and do get HS, even at ages younger than what is considered to be the normal puberty ages.
> Menopause does not make HS go away
> HS can be debilitating; many HS sufferers are unable to work.
> HS can be painful; HS can be very painful; the pain is not in our heads; there are times that some people do need pain medicine.
> HS can be located on other parts of the body including face, legs, scalp, neck, etc.

Our Hope - what we hope to accomplish:
> Research and research funds for a cause and a cure; at the least, for viable, safe treatments
> Accurate information/accurate diagnosis/informed medical professionals
> Re-classification from a rare disease to what HS really is a very common and widespread condition
> Spread the word about HS there are so many people who have HS and don't even know that their ailment or condition has a name

What you can do:
> Sign the petition
> Get friends and family to sign the petition
> Educate yourself and others
> Donate time and/or money and/or your expertise or skills to our cause
> Spread the word about HS; If we can raise awareness, we can raise the money necessary to research the disease and find the cure; If we can raise awareness we can WIN!

How to get more information:

> HS-USA
http://www.hs-usa.org/
P.O. Box 130
Hamburg, Michigan
USA 48139

> Hidradenitis support group on Yahoo
http://groups.yahoo.com/group/Hidradenitis/

Thanks in advance for any and all help.
The cure is out there by reading, signing and sharing this petition, you are helping to find the cure.