FREAKSHOW! The public reveal of devastating diseases

People living in the 1700’s, 1800’s and a portion of 1900’s may disagree with the next statement: Circus freak shows are far from entertaining but rather an inhuman reaction to medical anomalies. Coining them as entertainment, freakshows displayed humans with rare and devastating conditions. To name a few: ‘The Elastic Man’ who had Ehlers Danlos Syndrome, ‘The Lion Faced Lady’ who had a condition now called Hypertrichosis, “The Seal Man” who had no limbs and ‘The Elephant Man’ who was later discovered to have Proteus Syndrome.

Through my research amongst infamous circus debuts, I landed upon ‘The Elephant Man,’ which tugged at my heart strings more than others. Proteus syndrome was named after a Greek god whose name meant “the Polymorphous.” This rare disease has an unknown cause and is characterized by a group of abnormalities occurring together with varying degrees of severity.

Characteristic abnormalities include a progressive overgrowth of connective tissue that develops on the soles of the feet, palms of the hands and at times on the chest/back area (Cohen, M, 2005; Samlaska, C et al., 1989). These overgrowths form in a way that resemble the sulci/gyri orientation of a brain, thus why it is called ‘cerebriform connective tissue overgrowth’ (Cohen, M, 2005). Another key characteristic is progressive asymmetric growth of bone – often resulting in disproportionate limbs, back, neck and torso (Cohen, M, 2005; Samlaska, C et al., 1989). These bony overgrowths can lead to malfunction of joints, eventually causing immobilization. Most people with this syndrome will also develop organ dysfunctions such as cystic lungs, enlarged colon, and enlarged thymus.

According to National Organization for Rare Disorders, those with Proteus syndrome will likely have many growths including lipomas, hamartomas (noncancerous growth made of abnormal cells and tissue), meningiomas, benign tumor growths of salivary glands and/or angiomatous (often benign growth consisting of blood vessels) (2018).

People who suffer from this syndrome are in a great deal of pain, both physical and emotional. Humanity has come a long way since circus days, but it is up to us to continue this change. So instead of pointing a finger or making a face, do your best to put yourself in that person’s shoes and wrap your heart around strangers who suffer and count your blessings. 

Cohen, M. (2005). Proteus syndrome: An update. Medical Genetics, 137C(1), 38–52. doi:10.1002/ajmg.c.30063

Samlaska, C, Levin, S, James, W, Benson, P, Walker, J, Perlik, P. (1989). Proteus Syndrome. Arch Dermatol, 125(8), 1109–1114. https://doi.org/doi:10.1001/archderm.1989.01670200085015

NORD (National Organization for Rare Disrders) (2018). Proteus Syndrome. Retrieved October 3, 2019, from: https://rarediseases.org/rare-diseases/proteus-syndrome/