Some patients especially PC-K6a children experience short sharp ear pain. Additional study is needed to learn more and find correlations between pain in ears and PC. CARING FOR EARS FIRST BITE SYNDROME "First Bite Syndrome" is the only term we have found that comes close to describing … [Read more...] about Ears
Pachyonychia Congenita Conditions
Neurovascular Structures
Painful blood vessels or nerve endings grow in calluses and make trimming difficult and increasing the pain. The neurovascular structures (NVS) can be seen or unseen and if get hit causing shooting pain and bleeding. CARING FOR NVS Dr. Edel O'Toole, MD, PhD, "NVS..." In 2019, PC Project … [Read more...] about Neurovascular Structures
Itch
Deep itch happens under, around, or in the calluses and sometimes cysts. Like the painful calluses, this deep itching can interfere with sleep and make the feet feel uncomfortable and irritable. Trying to itch the deep itch can cause the skin to blister and creates additional pain. CARING FOR … [Read more...] about Itch
Cracks
Cracks in the skin on hands or feet are annoying and cause additional pain. Cracks happen across all mutations and catch on clothing or bedding. CARING FOR CRACKS Dr. C. David Hansen, MD, "Cracks in the outside layer of the skin are usually called fissures. These occur with thickening of the … [Read more...] about Cracks
Pain
The veritable constant pain is the worst thing about PC. PC causes a unique type of chronic pain unlike that of most other syndromes. Further, PC pain is a very individual matter and varies greatly from day to day, season to season. As one patient said “I would say the worst thing for me … [Read more...] about Pain
Nails
Regular nail care is essential for those with PC. Patients use a variety of methods and tools. Watch the Caring for PC - Nails video for suggestions. CARING FOR NAILS Trimming nails regularly — not too close or leaving nails too long — is the best practice for PC Nails. PC … [Read more...] about Nails
Mouth, Tongue, & Larynx
Thick white build up on the tongue, sores on the corner of the mouth and issues with the voice box (larynx) have been reported in PC patients. Approximately 84% of PCers experience buildup of a thick white film on the tongue and inside cheeks. At the 2005 Patient Support Meeting, Dr. Leonard … [Read more...] about Mouth, Tongue, & Larynx
Follicular Hyperkeratosis
Follicular Hyperkeratosis (FHK) is caused by keratin buildup around the hair follicles, which creates bumps on the skin. These bumps usually form around friction sites on the skin (the waist, hips, knees, and elbows.) These symptoms are more common in children and usually lessen in the … [Read more...] about Follicular Hyperkeratosis