Social Security

1. Is the disease recognized as chronic?

It is not on the list of illnesses deemed "long and costly", but see Question 2.

2. Can the patient receive 100% cover by social security?

Yes, in certain cases and in some countries when a very detailed medical certificate is provided and a discussion is held with the relevant social security official and when the illness really is expensive.

3. Can the patient be recognized as disabled? Yes.

Chapter 27

An Uncommon Valor

27

Sylvia Shawcross

Contents

27.1 Kevin 194

27.2 Deborah 195

27.3 Elizabeth 195

27.4 Melony 195

27.5 Kerrie 196

27.6 John 197

27.7 Caroline 197

27.8 Arnold 197

27.9 Mabel 198

27.10 Nassim 199

27.11 Mira 199

27.12 Mindy 200

This chapter of this remarkable book does not take the form of a clinical paper: It is instead a collection of biographies given here specifically to impart to practitioners and health care professionals a glimpse into the world of their patients. It is, after all, the individuals with the disease hidradenitis suppurativa who are the reason why this book has been written. Their voices have long been silent. The advent of the internet as a means of communication has changed this silence into a chorus and perhaps now a deafening roar. I certainly hope so. From 1996 to 2002 I had the privilege to work with and for fellow sufferers of the disease on the internet at a time when the 150-year silence was finally broken. At that time, we discovered caregivers were, for the most part, the only human beings that people with hidradenitis sup-purativa would admit to having this disease in their "non-internet" lives. For some, even this was more than they could manage. I urge physi cians not to take these last statements lightly. I urge you to think about this in light of the biographies that I am presenting to you here. Individuals who have this disease from my experience want knowledgeable and honest caregivers. In light of the lack of success with most treatments, compassion goes hand and hand with that care.

I could indeed write here about the issues this disease highlights. I could discuss antibiotic resistance, controversial treatment options, physician care that drives many to self-care, depression, suicide, lack of pain-management options, the physical problems of odor and leakage, lack of diagnosis or misdiagnosis, disability, healthcare costs, loss of self-esteem, disfigurement, secrecy, isolation, lost relationships, cultural taboos and nomenclature, confusion over and between treatment advisors, lack of treatment guidelines and the list goes on. Indeed I could discuss many things including a host of mythologies that have followed this disease for 150 years, but individuals with this disease can speak for themselves. Collectively they have that power now. They are finally free of their long, lonely and painful silence. All that I have done and learned during those 6 years can be stated fairly succinctly: living with this disease creates a special human being, one infused with an uncommon valor in the face of overwhelming odds. Those odds are changing for the better. I believe that hope lies right now in your hands in the form of this book and the researchers, sufferers and the friends and families of sufferers who have made it their mission to change the situation for us all. These biographies were collected from 1996 to 1997 and are from some of the first people who joined our internet support group. It was, at the time, the only such support list available. The names of individuals have been changed otherwise the content remains as it was given.

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