Tears, appreciation, profound love, and a sigh of relief that you have never experienced in your relationship with an HS patient

HSPublicationsTimeline

Hidradenitis suppurativa scholarly publishing from the 1940s through 2016

For centuries Hidradenitis suppurativa has been notoriously neglected and ignored, until recently. I speak of and take a look at the simple math that tells of real HOPE for patients, in stark contrast to the awareness they have now that is. Currently spoken of often in anger is that there is no research, no doctors, no understanding, and NO support and as a result NO HOPE. I know because I see this.  I am a patient in or concerned with the mass majority of groups around the world, wherever I can make and help new friends. Support groups similar to where I originally found answers about myself and this disease.

I share this data for myself and for them, because until my own research provided for clarity and education, having knowledge as such not only provides for hope, but improved mental hygiene. Our mental health informs to a degree the level for which we suffer physically. I put this together for us, but now this post is for our families and friends. Because just like living in mystery without support and answers, our families and our friends need awareness as well. It is their support that will improve our health more than any treatment available. I promise you that is true. Please continue reading this post for the ones you love. Please share this post with the world, I also promise you that there are many patients in your life right now that do not speak of or share this disease with anyone – that is a fact.

Last week I published a post titled “No reason for Hidradenitis Suppurativa patient HOPELESSNESS any longer

I am not entirely sure there is any reason I can see for HOPELESSNESS anymore, only HOPE or in fact elation that globally we are now being recognized and research publishing is growing yearly by over 100%. This month is epically historic for ‪#‎HidradenitisSuppurativa‬ patients and awareness. Not since 2005 and the “1st International Hidradenitis Suppurativa Research Symposium” has there been anything more important to have awareness for. Please share with all patients, it is a crime if this entire community is not aware of how hard we are being fought for. 

This historical disregard from medical science has resulted in the HS patients like myself to live the majority, if not our entire lives without access to education, proper healthcare, understanding, or empathy from the people in their lives. This not only results in fatality for us after so many decades of living without treatment, but aside from the physical severity, the mental health implications are more extreme daily for us than a quick demise often caused by cancer or alike.  In fact, a rare comorbid cancer, Squamous Cell Carcinoma (SCC), we are also afforded and are at a 50% increased risk for into our third decade if left untreated.

“The risk of developing any cancer in the cohort with Hidradenitis suppurativa increased 50%”

“Recent research also indicates that long standing HS in non-axillary areas is a premalignant condition of squamous cell carcinoma (SCC) which often presents late and results in death, highlighting another significant reason for the urgent necessity for increased clinical awareness and research. The risk of developing any cancer in the cohort with HS increased 50% (95% confidence interval of SIR, 1.1-1.8, based on 73 observed cases). Statistically significant risk elevations were observed for nonmelanoma skin cancer (5 cases; SIR, 4.6; 95% confidence interval, 1.5-10.7), buccal cancer (5 cases; SIR, 5.5; 95% confidence interval, 1.8-12.9), and primary liver cancer (3 cases; SIR, 10.0; 95% confidence interval, 2.1-29.2).”

SOURCE: National Center for Biotechnology Information, PMI ID: 11405761

When this disease impacts a patient severely for decades and is left untreated the result can be fatal. It is a rare occurrence and presents only in some of the most severe cases, but a reality for us. Squamous Cell Carcinoma (SCC) uniquely presents in a specific area for men where we suffer the most and more than our counterpart gender statistically in these areas.

I turned 36 yesterday. I was diagnosed just this past June after 20 years of the images below being part of my life. Yes, for 20 years they have presented and with me ever since.

I was born with Hidradenitis suppurativa. My brother and father also suffer. I am now into my third decade. I am a proud father of three amazing children, 2 girls and a boyThe most severe areas I am affected throughout have gone untreated. I am not terribly worried, but I am now included in that increased 50% risk category into my third decade.

Antibiotics or any non invasive treatment are not going to help any patient outside of early onset when management attempts to slow and quiet HS pathology can sometimes provide for limited and temporary results.  For patients like me radical surgery is the only option to remove large areas of affected deep tissue. Recurrence is statistically guaranteed with our proper treatment.  It will be in September, another 6 months until I am able to see a specialist. The Dermatologist that I have been under the care of knows most of what he does about this disease from me. Despite multiple attempts from me to have him address these areas of my body in question, he has never looked or cared to while in a rush to attend to his next 15 minute appointment. He has never seen this part of my body and halfway out the door of our visits instructs me to come back in if it “acts up”. This is a flaring condition. A call to make an appointment results in a visits always weeks later. It is impossible for him to understand the pathology of my circumstance and there is nothing I can do but wait and be patient with what insurance does or does not provide for.

My medical records from him identify a few areas affected he has seen only at during my first appointment, but have no mention of the other 80% of my body.

This level of neglect and disregard for this disease is not a secret. When considering the degree to which we are impacted, it an injustice to all humanity and in fact often unbelievable.

If you are reading this as someone who knows a patient, please believe what they choose to share with you. What they tell you is a reality regardless if you can understand it or not.

Do them a favor and spend some time to understand the person you love. Review the science below. You do not have to hear this from me or them. You can now learn what they have been attempting to make you understand from what is now accepted and current medical research science. If you are not acknowledging them and disregarding their cries for help and understanding, you are in fact destroying their mental health, possibly to the same degree this disease does for years. Please review the following science I include below, you will not ever again question the person you love and make wrong.

I doubt they are looking for an apology. More than likely a warm embrace from you and a whisper, “I understand that I do not understand“. Do that and I promise you will see tears, appreciation, profound love, and a sigh of relief that you have never experienced in your relationship with an HS patient. Your gesture will result in us also realizing how exhausted we are trying to make you understand, and that we never could in the first place.

I live this reality in my personal life and want the same thing from people to this day in my life near or far, who make me wrong for being born with Hidradenitis suppurativa. We have no choice. It is important that you understand that you cannot ever understand. If you want to help us this is all it takes, unconditional trust and respect for our reality. Do not make us wrong. Do not question the level of severity this debilitating disease brings to us as children, and everyday since around the clock.

Physically and mentally this disease is variable and unpredictable. Please do not ever think what you saw or know in the past to be our current reality, it is not. Most of which you have never seen and never will. We will not either. Severe and debilitating mental health implications for us is through the roof if you know that or not. We often do not. For a disease with no consistent treatment or a cure, addressing the issues I speak of above I promise will provide for real results.

You can make us better where professional medical treatments fail us. I promise this to be true. That is all it takes.

ronhs1

Ronald James Bercume Jr.
20 Years living with Hidradenitis suppurativa

 


 

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