More than 3 million people around the world have Charcot-Marie-Tooth (CMT) disease, but even with its quirky name, CMT is still relatively unknown. A progressive, degenerative disease involving the peripheral nerves that branch out from the brain and spinal cord to other parts of the body, CMT can result in deformities and limited use of a patient’s arms, hands, legs, and feet. 

While CMT is considered a rare disease, it has apparently been with us throughout documented history.

To most people who see Andrew Wyeth’s 1948 “Christina’s World“, the woman in the foreground is simply relaxing on the ground, rising up to better see the farmhouse in the distance. Audiences do not realize this is a depiction of an actual person: Anna Christina Olson, Wyeth’s friend and neighbor. Rather than relaxing, she is dragging herself along the ground because she is crippled by CMT. 

Dr. Marc Patterson of the Mayo Clinic agrees that rather than polio as first thought, Christina in fact suffered from CMT. This is why you see Christina (who died of natural causes in 1968 at 74 years of age) crawling on the ground. 

In 1896, at the early age of three, Christina had trouble walking. Her balance was off, she walked with a notably unusual waddle even for a toddler, and her mother crafted knee pads to buffer her tumbles. These difficulties would worsen as she aged, a progressive deterioration of function, causing her to lose strength first in her legs and then eventually in her arms and hands before she became nearly immobile. In 1919, during her mid-20s, she reluctantly agreed to spend one fruitless week in Boston City Hospital as an inpatient. They failed to diagnose her, offering the uninspiring prescription that she “just go on living as [she had] always done.” 

Christina never used a wheelchair, preferring to crawl around her home, a 16-room farmhouse and its massive grounds in Cushing, Maine. Andrew Wyeth would describe her “crawling like a crab over the New England shore”, using the remaining strength in her shoulders and hips to pitch herself forward. She is captured in this precise pose, mid-crawl up a hill, in Wyeth’s painting. 

Before Christina’s World, even before CMT had first been named by doctors, French sculptor August Rodin depicted it in his famous work, Clenched Hand; a sculpture frozen in a painfully exaggerated and abnormal posture. Rodin’s inspiration came from studying medical specimens at the Dupuytren Museum in Paris. Since CMT had not yet been discovered, these patients were suggested to have had rheumatoid arthritis attacks of the hand. 

Stanford University scientists diagnosed Clenched Hand in 2014 with having CMT as part of the Inside Rodin’s Hand: Art, Technology, and Surgery exhibit. Watch the clip below to watch more about the process of this diagnosis. 

These stories are exactly what is needed to continue to raise awareness of CMT. The more people who know about CMT and understand how it can steal away the joys of life bit by bit, the more might be inclined to help us in our pursuit of treatments for it. 

It is not impossible; science is closer than ever in history to providing a pathway to a cure. We are on the verge of being able to end the legacy of CMT; a legacy that has affected lives generation after generation. Refuse the invisibility of this disease and show the world how not rare CMT is to you. 

#rarenotrare #rarediseaseday #showyourstrips #refusetheinvisbility #seerare

Written by: George Simpson