I am writing to ask for your consideration, and for your valuable time, to learn about an orphan disease that I was born with and have been silently suffering through for decades. It has ruined my life at times and the lives of millions of others for centuries. The Health Care system for patients – due to the orphan status of this disease’s research efforts – suffers itself from a pandemic of misinformation and a dangerous lack of awareness.
Such abuse is due to a lack of awareness and education for both patients and physicians, specifically in the United States which lags pathetically behind other countries in awareness.
Health Care Civil Rights abuse is rampant for HS patients, misdiagnosis is common and it is costing real lives.
Patients in the later stages of this disease live the majority of their lives in incomprehensible agony, both mentally and physically. In more cases than not, these patients watch their children experience the same fate.
It is sadly very common that we suffer silently for decades in isolation. We are embarrassed, ashamed, and think we are alone – riddled with guilt for no reason that exists in reality – other than the perceptions of society’s standards. The taboo nature and stigma that surrounds Skin Disease is very much thriving culturally across the world for patients.
I personally kept this deadly secret for twenty years, until just five months ago when I discovered why I was sick, and what HS was.
I know this sounds crazy, and it is, but it is TRUE. Right now, there are over 20,000 patients in closed Facebook Groups sharing pictures of their own bodies in a search for acceptance, answers and knowledge; supporting each other through Social Media technology because no one else will. We are fighting for understanding and a voice that other chronic disease patients are afforded, and we are losing historically; losing tragically.
Having even a simple semblance of awareness and knowledge of this disease will change your life forever and make anyone with a heart question his or her own real sense of empathy and compassion, their own introspective sense of humanity, humility and gratitude for the simplest of things we are blessed with in life.
It is a fact that you now know someone who suffers from this Invisible Disability: invisible ONLY by design of us as patients, and a society fraught with fear of what it does not understand. HS is that common in the global population and has been hidden in the shadows of stigma and taboo for centuries. I can, and am happy to, prove that statement to you.
These online communities I speak of and found: Observing them for even a short period of time will expose one to the full range of human emotional experience. It is both beautiful and terrifying.
Exposure to random acts of kindness and humility I have experienced – never in my lifetime until recently – have changed me forever.
Equally as profound, bearing witness to a choir of thousands of patients in horrific pain sounding off together in cyclical suffering on a daily basis, has given me my inescapable purpose and the good work of my life.
The situation is dire and we need your help. Can I ask for your listening and empathy? May I present scientific case studies by the thousands that support what I am saying now?
If I prove what I am saying is true, would you help me in any way you can to raise awareness for this Chronic Disease?
In my humble opinion, when considering the physical and mental health implications of Hidradenitis suppurativa (HS) – the comorbid essence of this chronic disease – HS is in fact the most severe skin disease ever known to mankind by far, if not easily one of the most debilitating diseases ever across the spectrum.
I am confident you will be able to say the same as well with your generosity of listening and understanding afforded to this suffering community of millions who have no voice, and very much need yours to help.
Please take a moment to review my research resources to learn of a disease that is much more common than anyone would like to admit.
I look forward to hearing back from you.
Ronald James Bercume Jr.
20 Years living with Hidradenitis suppurativa
Orphan Disease & Healthcare Civil Rights Activist