Reader response: Disability in adults with arthrogryposis is severe, partly invisible, and varies by genotype

Dai et al.¹ published a report of a long-term comprehensive follow-up of adults with arthrogryposis from their specialized clinic, perhaps the first such clinic in the world. They published valuable information, but emphasized the patients' negatives rather than their strengths, which raised a red flag about how we, as researchers, write and publish findings. Language and tone that we use in our literature makes a difference. In modern clinical literature, it must inspire physicians to use positive language with their patients, encouraging patients to become healthier and independent, despite their disabilities. How patient data are portrayed in our literature matters since more patients and families access our work. Dai et al. writes about impairment rather than function. If a parent were to read this article, he or she would think his or her child will become a miserable adult not able to do much, but other arthrogryposis studies refute this.^2–4 Adults with disabilities must be encouraged to get an education and live as independently as possible, joint limitations or not. If negative attitudes continue in health care literature, our patients will have little hope in their future or faith in us who are supposedly working on their behalf.

from Neurology recent issues https://ift.tt/2HUVvV1