Boiling over for a HS Revolution!

Karl Marx, the economist, sociologist, and revolutionist’s written works has had a global impact. Marx and Friedrich Engels “The Communist Manifesto” and “Das Kapital” formed the basis of Marxism, which is still debated globally. Marxism forced most governments to rethink their domestic policy, the plight and equality of the working class to be reconsidered. His effect on nationalised industries throughout the world, including our National Health Service. The contribution of Marxism is immeasurable.

Marx complained of being plagued by “boils”, “carbuncles”, and “furuncles” from his early forties in letters of correspondence, which are contained in the 50 volumes of the “Marx/Engels Collected Works”, enabling Shuster (2007), a dermatologist, to retrodiagnose Marx with HS in 2007. HS does not have a diagnostic test. Is diagnosed based on the persistent, scarring and destructive lesions, in site-specific areas of the armpits, anus, groin, lower abdomen, and inner thighs, but can occur elsewhere. Shuster determined that Marx’s lesions occurred in the HS site-specific areas, and that he suffered with severe HS. HS is a painful, chronic, relapsing, systemic inflammatory condition, with profound psychological, emotional, and physical effects (Jayarajan and Bulinska, 2017).

Marx’s HS; how it affected him, his ideologies, and written works are debated. Yes it most certainly affected his ability to work, due to the “wretchedness of an existence” it caused him! Possibly inspired and helped develop his “theory of isolation” and other works?

As a HS sufferer myself, I can empathize to misery that HS caused him. I read numerous posts from others suffering; failed by medical professionals. Turning to social media, seeking answers, sharing personal, and scientific information about HS (Hessam et al, 2017).

We fear antibiotic resistance. Antibiotics are the main “off label” treatment that we (undiagnosed and diagnosed) are prescribed due to their anti-inflammatory effects. HS is NOT caused by infection, what causes HS is still not fully understood, but secondary infections in biofilms invading tracts are a issue, aggravating the progression of HS (Smith, Nicholson, Parks-Miller, & Hamzavi, 2017).

HS is debated by the HS community; consisting of public, private and secret groups from various countries. Many hide they have it. Some are open about their condition to raise awareness of HS with the public, hoping to find others with HS suffering alone. HS is common, affecting 0.5–4% of the global population (Jayarajan and Bulinska, 2017), is hardly known about in medical communities, the public, and even those with HS! Resulting in discrimination through lack of knowledge and misinformation, causing years of misdiagnosis, stigma, and unrecognised pain.

Marx, Engles, and Mary Burns dynamics and co-creation enabled and brought the plight of the working class into the open enabling change! Help us do the same for HS! Give us Hope for HS by supporting us to get HS out in the open. To build on our HS Foundation’s using HS Action Together to revolutionize our plight with HS. The future is citizen science action research, digital health, technology; combined with scicomm, and future media, bringing together all stakeholders, in a two way collaboration of co-creation, to pioneer personalised treatments. HS awareness & education enabling interrogation of misinformation and stigma….. but first it needs to be out in the open, discussed, and debated. Be our hero! A HS change maker!! Enable us! #HSactiontogether #HidradenitisSuppurativa

Reference List

Alikhan, A. (2016). Hidradenitis Suppurativa. JAMA Dermatology, 152(6), 736. doi:10.1001/jamadermatol.2016.0185

Hessam, S., Salem, J., Bechara, F. G., Haferkamp, A., Heidenreich, A., Paffenholz, P., Sand, M., Tsaur, I., & Borgmann, H. (2017). Hidradenitis suppurativa gains increasing interest on World Wide Web: a source for patient information? International Journal of Dermatology. 56, 726–732.

Jayarajan, R., and Bulinska, A. (2017). HIDRADENITIS SUPPURATIVA (ACNE INVERSA): A REVIEW OF AETIOPATHOGENESIS AND MANAGEMENT. EMJ Dermatol. 5(1), 66–73.

Shuster, S. (2007). The nature and consequence of Karl Marx’s skin disease. British Journal of Dermatology. 158(1), 1–3. doi: 10.1111/j.1365–2133.2007.08282.x

Smith, M. K., Nicolson, C. L., Parks-Miller, A., & Hamzavi, I. H. (2017). Hidradenitis suppurativa: an update on connecting the tracts. F1000Research. 6, 1272. doi: 10.12688/f1000research.11337.1.

Ximeria, W., and Jemec, J. (2013). A 3D Ultrasound study of Sinus Tract Formation in Hidradenitis Suppurativa. Dermatology Online Journal. 19(6), 6. doi: 18564