Friday, May 13, 2011

HS Awareness Purple Ribbon Campaign

Hello there! I’m Teri Korri, and, I’m your neighbour. First of all, thank you for taking time to read this. For 13 years, I have suffered from a very rare auto immune condition named Hidradenitis Suppurativa, otherwise known as HS. Please read below.

WHAT IS HIDRADENITIS SUPPURATIVA?... (HS), also known as 'Acne Inversa', is a physically, psychologically, and socially disabling disease affecting inverse areas of the body (those places where there is skin-to-skin contact - armpits, groin, breasts, etc.), and where apocrine glands and hair follicles are found. It is non-contagious and recurrent; typically manifesting as a progression from single boil-like, pus-filled abscesses, or hard sebaceous lumps, to painful, deep-seated, often inflamed clusters of lesions with chronic seepage involving significant scarring. Abscesses may be as large as baseballs, are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal. These "flare-ups" are often triggered by stress, hormonal changes, or humid heat. Drainage of the lumps provides some relief from severe, often debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage. Persistent lesions may lead to the formation of sinus tracts, or tunnels connecting the abscesses under the skin. At this stage, complete healing is usually not possible, and progression of the disease in the area is inevitable. Occurrences of bacterial infections and cellulites are likely at these sites. Fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight. HS typically goes undiagnosed for years because patients are ashamed to speak with anyone. When they do see a doctor, the disease is frequently misdiagnosed. Only relatively few physicians are able to recognize it and even when they do, suggested treatments are often ineffective, temporary and sometimes even harmful. There is no known cure or any consistently effective treatment. In advanced, chronic cases, surgery is often the choice, but recurrences of HS are not uncommon. Historically, HS has been considered a rare disorder, because it is difficult to accurately estimate the number of HS victims; they conceal their condition, even from friends and close relatives. Estimates, however, indicate at least 1 million - potentially up to 12 million - Hidradenitis Suppurativa sufferers in the United States alone!

So now that you have read a brief description of what HS is, you may understand why not many people have ever heard of HS. Having been a victim of HS for 13 years, I am tired of being told there is no hope, that no research is being done because it is not considered profitable enough. It is my hope to begin to spread the word about HS with one person, one neighbourhood at a time. In an effort to raise awareness for HS, I have taken this task upon myself, with your help of course..…..the task is easy, the rewards will be huge. Purple signifies the color for auto immune diseases. All I ask that you do is simply tie a ribbon around something in your yard. A tree, a mailbox, a light post, anything in your yard that will make the ribbon visible from the street. I ask that you leave this ribbon up for at least two weeks and at the end of that time, pass on this information, to a family member, a co-worker, or a friend, a church member …basically anyone. Chances are that besides myself, you actually are acquainted with someone who has HS but has never disclosed this information to you due to the overall embarrassing nature of the disease. Chances are that if half of you do pass this on, someone who has or knows someone with HS will receive this. So… on that note, I am asking for your help in helping me to get the word out and help raise awareness for this “hidden” debilitating illness, HS…“The hidden disease“. There are so many who suffer in silence and I feel I need to help to change that. This is for now, the only way I can begin to undertake this task. To those of you on Facebook please consider changing your profile image to a purple ribbon and directing people who ask you questions to this note.

I really want to thank you for your time and for your participation in my efforts to bring this to light so that more people know that we are here and just want to be heard so that one day, we may find a cure, or even a suitable treatment. I appreciate your support more than you can imagine. Doing such a small thing can possibly help millions world wide.

For more information on HS please visit my blog at for the my story with images

Again, I thank you from the very bottom of my heart. This campaign originally started by Dale Rickwood 

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