Pachyonychia Congenita can be excruciatingly painful, isolating, and embarrassing.
We are currently pulling data together from the patient registry and the most recent Quality of Life addendum survey. More information will be coming soon.
Mariam Abbas, Mary E. Schwartz, Frances J.D. Smith, W.H. Irwin McLean, and Peter R. Hull. PCQoL: A Quality of Life Assessment Measure for Pachyonychia Congenita. Journal of Cutaneous Medicine and Surgery, Vol 19, No 1, 2015.