There are many healthcare professionals who can help diagnose, treat, and manage PC. This section introduces some of the specialists who may be involved in PC care and explains how they can help. It may also be helpful to review this information before meeting with a healthcare professional for the first time. Throughout this section, members of the PC community also share practical tips for making the most of medical appointments.
Because PC is a rare condition, many healthcare professionals may have little or no experience caring for someone with PC. Families and individuals with PC may find themselves helping to educate their healthcare team about the condition. PC Project offers brochures, educational materials, and other resources that can be shared with healthcare professionals to support these conversations.
Healthcare professionals who may be involved in PC care include primary care providers, dermatologists, podiatrists, chiropodists, pediatricians, and other specialists, depending on an individual’s needs. .
General Practitioners
This may be the family’s regular doctor or the healthcare provider seen for routine check-ups. It is not necessary for the doctor to be familiar with PC from the beginning, as long as they are willing to listen, learn about the condition, and work together with the family. Because PC is rare, families may need to explain how the condition affects daily life and share educational resources about PC.
If there are questions or concerns about a recommended treatment, PC Project can provide educational information and resources that may be helpful for both families and healthcare professionals.
A primary care provider may be able to help manage many routine aspects of PC care, such as treating nail or skin infections, draining or removing cysts when appropriate, and providing guidance on caring for blisters or swollen nails.
Healthcare systems vary around the world, so some families may need a referral from their primary care provider before seeing specialists such as dermatologists, podiatrists, or chiropodists.
Dermatologists
A dermatologist is a doctor who specializes in caring for the skin, hair, and nails. Many people with PC see a dermatologist for help managing their symptoms. A dermatologist can provide guidance on caring for PC and may also assist with managing thickened skin and calluses.
Because PC is a very rare condition, even dermatologists may not be familiar with it at first. That is okay. The most important quality in a healthcare provider is a willingness to learn about PC, listen to the patient and family, and work together to provide the best possible care. Many healthcare professionals are surprised to learn that calluses that appear ordinary can cause significant pain for someone living with PC.
Building a positive relationship with a dermatologist can be an important part of long-term PC care. As new treatments are considered, families may have questions about whether they are appropriate for PC. PC Project can provide educational information about therapies that have been used by people with PC and share knowledge gained through the International Pachyonychia Congenita Research Registry (IPCRR).
PC Project also has a Medical and Scientific Advisory Board made up of healthcare professionals with extensive experience caring for people with PC. When appropriate, these experts are available to provide educational support and share information with healthcare providers who are caring for individuals with PC.
Chiropodists, podiatrists
A chiropodist or podiatrist is a healthcare professional who specializes in foot care. Many people with PC work with a podiatrist or chiropodist to help manage foot symptoms. These specialists can provide advice on caring for the feet, safely reduce thickened skin and calluses, treat cracked heels, and help manage certain foot-related infections. They may also recommend or prescribe specialized insoles, orthotics, or footwear to improve comfort and reduce pressure on the feet.
Many families find it helpful to see a podiatrist regularly for routine management of thickened skin. Below are some practical tips shared by a family in the United Kingdom about their experience working with a chiropodist.
What one family with PC in the UK does: visit an NHS chiropodist regularly (approx. every 3-4 weeks)
I’ve included some tips which work well for us in the UK, where we have a National HealthCare Service (e.g. we do not pay privately for these appointments).
Top tips:
- Try to establish a relationship with your chiropodist- with our son’s PC we have found that there’s a fine balance between removing enough skin without going too low. If it’s too low it hurts!!
- Try to plan your appointments around other activities. Even when we get the balance right with how much skin is removed, his feet will still often be sore after an appointment so we try to make sure we have nothing planned after school that day so he doesn’t need to be on his feet.
- Book appointments well in advance. There is often such a demand for these services that I try to book months in advance so that we are seen regularly.
- Work with the school to manage the lateness/absences due to the appointments. These are a medical necessity and the child should not be penalised for missing school for regular care.
- Use the opportunity to help spread the word about PC- chiropodists see a lot of feet! We have brought in leaflets before for them to give to other patients who they think may have PC.
Differences between medical degrees
Healthcare professionals have different training and areas of expertise. Here is a quick guide to some of the most common credentials.
MD (Doctor of Medicine)
An MD is a medical doctor who has completed medical school and residency training. MDs can diagnose illnesses, prescribe medications, perform procedures, and specialize in areas such as dermatology, pediatrics, orthopedics, or neurology.
DO (Doctor of Osteopathic Medicine)
A DO is a fully licensed physician with training similar to an MD. In addition to standard medical education, DOs receive extra training in the musculoskeletal system and emphasize a whole-person approach to patient care. Like MDs, they can prescribe medications, perform procedures, and specialize in any area of medicine.
PA (Physician Assistant/Physician Associate)
A PA is a licensed healthcare professional who practices medicine in collaboration with physicians. PAs can perform physical exams, diagnose illnesses, order and interpret tests, prescribe medications, and help develop treatment plans.
NP (Nurse Practitioner)
A nurse practitioner is a registered nurse with advanced education and clinical training. NPs can diagnose and treat illnesses, prescribe medications in many regions, provide primary or specialty care, and focus on health promotion and disease prevention.
Healthcare Degrees in the United Kingdom
MB, ChB, MBBS, or MB BCh BAO
These degrees are the standard medical qualifications awarded to physicians in the UK and Ireland and are equivalent to an MD in the United States. Graduates are fully qualified medical doctors.
- MB = Bachelor of Medicine
- ChB/BCh/BS = Bachelor of Surgery
- BAO = Bachelor of the Art of Obstetrics (primarily used in Ireland)
PhD (Doctor of Philosophy)
A PhD is a research doctorate rather than a medical degree. People with a PhD are experts in a particular field of study and often work in research or academia. While some healthcare professionals also hold a PhD, it does not, by itself, qualify someone to provide medical care. One exception is clinical psychologists, who often hold doctoral degrees but generally do not prescribe medications.
If you are looking for a medical provider, check with your insurance company to see who is in your network. Find a doctor who is willing to listen and work with you to learn about PC from you and from PC Project.
