Fact, Fiction, or Misinformation:
“HS IS THE THIRD MOST PAINFUL DISEASE………”
I publish aggressively in an attempt to clean up misinformation within our patient community. Specifically, misinformation that is driven and perpetuated by social media. I have posted several times over these past two years about how HS patients often refer to or make memes for #HSAWARENESS about what now is perceived and an unquestionable truth,”Hidradenitis Suppurativa (HS) is the 3rd most painful disease“.
For a while, I was not sure how this statement had become a beloved “fact” within our community across social media. When used, it certainly was or is never accompanied by a medical citation or source of reference. It was and is used very often in the posts and conversations of patients within support groups and public posts attempting to educate others about our Orphan Disease and circumstance of neglect in science, medicine, and research. I understand why patients use it and I am sure when thinking about a purpose as such you can understand as well.
To draw attention to our unmet needs and to create urgency and importance for our circumstance. It is used as a statement of fact (without citation) to create urgency around the need to create public awareness for our disease and to compare it against other well know illnesses or diseases. Its usage is intended for us to be acknowledged.There is absolutely nothing wrong with this intention by many who have used the statement and continue to.
I post now on this topic in an attempt not to point out that there is a statement in HS patient online culture that is false. I do not post to point out a mistake made by us for many years now with any finger pointing or sense of wrongness. On the contrary, I DO post now in an attempt to provide real statements and facts around HS and the relationship to PAIN in medical literature – or specifically the lack thereof.
I post now in an attempt to provide resources, citations, and medical fact that perhaps can be much more powerful as a tool for creating public awareness our neglected patient circumstance in Healthcare.
But first let us consider the source of this beloved statement, “HS IS THE THIRD MOST PAINFUL DISEASE………” and hopefully put it to rest for good.
Where did it, or where does it come from? I found the website pretty easily with a quick search. I have also, only several times, observed HS patients link to this site as a source of medical information and truth when using the statement as fact. By mass majority when I have seen it used in social media posts, comments in discussion around HS, or in graphics or memes for awareness no citation or source of medical fact has been used or this website linked to at all.
I will not go into great detail about what this website is NOT as a source of reliable medical information. It should be obvious. But let us just hopefully agree on a few facts. This blog was created from a Google FREE Blog service that anyone can set up. This blog is running Google Ads as an attempt to generate revenue from article keyword content. The blog is not maintained or updated since it was set up, nor is the ownership associated with it. it is a set-it-and-forget-it blog.
This may not be so obvious to anyone outside of blogging or digital publishing, but the article more than likely is paid for and written by an article spinning service – most often a offshore service that can be used to produce blog content for pennies on the dollar with only a intention to create click-bait content and to generate website traffic for monetary reasons only. Fiver is a decent example of an online marketplace that can be used to get quick content written on any topic – www.fiverr.com.
So what now, what are the facts and what is the globally accepted medical relationship between HS and PAIN for patients?
What is the truth and what are the facts about PAIN and Hidradenitis suppurativa (HS)?
To understand what the relationship between what is PAIN for HS patients in published medical literature and research publishing one must first understand one major fact. Focused or dedicated PAIN studies have been essentially nonexistent and largely neglected in research publishing and clinical studies or trials.
“Despite the central role of pain and distress in the presentation of HS, few studies have empirically evaluated the impact of pain and gaps remain in the existing psychosocial literature.” -SOURCE
This does not mean that the pain and suffering that we as patients endure for decades if not lifetimes is not represented in literature. This simply means that there has not been specific or standalone studies performed on the topic, perhaps not as much as there is or should be for other diseases and illness in comparison.
Allow me to leave you in closing on this topic with several quotes from medical publications and their respective citations. Perhaps these sources and quotes below can be used by our patient community when discussing what pain means for us as HS patients accurately as statements of fact to raise public awareness.
We should also think clearly about that there is NO scale of medicine’s most painful diseases. There is NO running list that medicine or research use in practice or research. These kinds of articles belong to the Internet and its infinite wisdom left to only less than credible websites and blogs, such as the one above discussed.
Please look to PUBMED, GOOGLE SCHOLAR or other global medical databases for scientific citation and statements of fact.
Pain, Psychological Comorbidities, Disability, and Impaired Qualify for Life in Hidradenitis Suppurativa
Author(s): Patel ZS, Hoffman LK, Buse DC, Grinberg AS, Afifi L, Cohen SR, Lowes MA, Seng EK
“The existing literature indicates that acute and chronic pain, depression, anxiety, and disability all contribute to poor quality of life in individuals with HS.”
“Despite the central role of pain and distress in the presentation of HS, few studies have empirically evaluated the impact of pain and gaps remain in the existing psychosocial literature.”
“There are no formal guidelines for treating HS-specific pain or psychological comorbidities.”
Abstract Source: LINK
Factors Contributing to Depression and Chronic Pain in Patients with Hidradenitis Suppurativa: Results from a Single-Center Retrospective Review.
Author(s): Vangipuram R1, Vaidya T, Jandarov R, Alikhan A.
“Patients with a greater number of areas of involvement were more likely to have both chronic pain and depression.”
Abstract Source: LINK
Morbidity in patients with hidradenitis suppurativa
Author(s): von der Werth JM, Jemec GB
“HS causes a high degree of morbidity, with the highest scores obtained for the level of pain caused by the disease.”
“The mean DLQI score for HS was higher than for previously studied skin diseases, and correlated with disease intensity as expressed by lesions per month.”
Abstract Source: LINK
Painful hidradenitis suppurativa
Author(s): Smith HS, Chao JD, Teitelbaum J
“Despite the severe pain associated with this disease, HS has been essentially ignored in the pain medicine literature.”
“The majority of patients rated their pain on a Numerical Rating Scale-11 ranging from 4/10 to 10/10 and described it at various times as hot, burning, pressure, stretching, cutting, sharp, taut, splitting, gnawing, pressing, sore, throbbing, and aching.”
Abstract Source: LINK
Pain management in patients with hidradenitis suppurativa
Author(s): Horváth B, Janse IC, Sibbald GR
“HS patients’ quality of life is severely impaired, and this impairment correlates strongly with their pain. Pain in HS can be acute or chronic and has both inflammatory and noninflammatory origins.”
“Sharp pain related to acute HS flares accounts for numerous emergency room visits.”
“For many HS patients, pain is a debilitating symptom that can lead to a severely impaired quality of life.”
“The European Dermatology Forum (EDF) guideline recommends the management of chronic pain in patients with HS according to the World Health Organization (WHO) pain ladder.”
“Inadequate treatment of pain may result in adverse events, anxiety, and depression.”
“There is a need for additional studies on pain management in patients with HS that should also take into account the contribution of comorbidities, including obesity, smoking, and depression.”
Abstract Source: LINK
Please enjoy these memes for your #HSAWARENESS social media sharing activities.
Tags: Comorbidity Pain Quality Of Life