5. Managing your PC with a professional
There are many medical professionals who can help you treat or manage your PC. This section details some of these people and how they can help you. It may be helpful to have a look at this section before you see a Medical Professional for the first time. In this section, PC Families also share their top tips for getting the most out of their time with a professional.
Remember, however, that even many medical health care professionals will not have seen PC and you may need to educate them! PC Project can provide leaflets and brochures. Please contact us if you would like some sent to you or you can download them here. https://www.pachyonychia.org/pc-pamphlets/ Some of the people who may help you are general practitioners, dermatologists, chiropodists, podiatrists and general practioners.
This may be your regular doctor, the doctor you see for regular check-ups. It doesn’t matter if your doctor knows about PC at first as long as she or he will listen to you and your parents and try to understand PC. You may have to explain PC to your doctor and tell him or her how it affects you. If you aren’t sure about a treatment your doctor prescribes for you, please contact PC Project. You can even tell about PC Project.
Your regular doctor may be able to help with your basic PC needs, like nail or other skin infections, draining/removing cysts or how to lance or drain infected nails and blisters.
Because healthcare systems vary in different countries, you may need to get a referral from your regular doctor in order to see specialists like dermatologists, chiropodists, or podiatrists for your PC.
A dermatologist is a doctor who specializes in skin. Many PC patients visit a dermatologist for help with their PC. He or she can give you advice on how to take care of your PC and may even help you trim your calluses
Just like a General Practitioner, you may have to first teach your dermatologist about PC. It’s okay if your doctors don’t know what PC is at first. PC is super rare! The most important thing is that your doctor wants to learn more about PC and is willing to listen to you as the patient. Sometimes, doctors don’t know that plain looking calluses that don’t hurt a person without PC can really hurt a person that has PC.
Doctors are people who care very much about their patients. Having a good relationship with your doctor so you can turn to him or her when you need PC help is important. Sometimes doctors want to give PC patients medicines that they hope will help. Because of the IPCRR (Patient Registry), PC Project knows a lot about which medicines help PC and which ones don’t. If you aren’t sure if something your doctor has given you will be effective for PC, please contact PC Project or ask your doctor to contact PC Project.
PC Project has a Medical and Scientific Advisory Board, made up of doctors who understand PC and who have talked with hundreds of PC patients. They will be happy to talk with your doctor about PC if needed.
A chiropodist or podiatrist is a specialised foot doctor. He or she may be able to give you advice on how to take care of your feet. They will also be able to shave off the hard skin that can build up with PC. They can also help with infections and cracked heels. They may also be able to refer you to have specialised insoles or shoes.
Many PC families see a podiatrist regularly to help shave off the excess skin. Here are some top tips from a family in the UK about seeing 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)
- 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
Confused about the difference between an MD, DO, MD, BAO, PA, and NP? You aren’t the only one. Here is a quick list to get you up to speed.
- MD stands for doctor of medicine. It is a designation that indicates someone who has completed medical school. To be an MD, you must finish four years of medical school and receive another three years of training through residency. After residency, you can pursue further training and become certified as a specialist in a certain field, like orthopedics, cardiovascular, neurology, etc.
- A DO is a doctor of osteopathy. Doctors of osteopathy attend four years of medical school, complete three-year residencies and can also choose to specialize after their training. The DO training focuses on primary care and emphasizes a whole-person approach to medicine. They also receive extra training in the musculoskeletal system and learn how to provide treatment for muscles and joints using techniques such as stretching, gentle pressure and resistance.
- PA, or physician assistant, is licensed to practice medicine with physician supervision. They undergo three years of training. PAs will often perform physical exams, diagnose ailments, request and interpret tests, provide advice on preventive health care, assist in surgery and can write prescriptions.Though supervised by an MD or DO, physician assistants are able to operate with independence when making decisions.
- An NP is a nurse practitioner. An NP is a registered nurse with enhanced training and education. They can act as a primary care provider to diagnose and care for patients, or they can work in a specialty. Nurse practitioners must have a master’s degree in nursing and a certification to practice as a nurse practitioner.
- In the UK the MB degree, which stands for bachelor of medicine, is awarded for passing the medicine exam examination, thereby qualifying as a medical doctor. This degree is really the equivalent to the MD in the United States–it’s the standard degree. To make things even more complicated, keep in mind that on occasion the “MD” degree is awarded by medical schools in the British system, in place of the MB. To receive an MD rather than an MB, students must complete a thesis and receive some additional training (e.g., research training) over and above what is required for the MB. Senior, academic physicians are more likely to have an MD; community physicians will typically have the MB degree.
- In the UK the BS, ChB and Bch degrees (which are are equivalent to one another) stand for Bachelor of Surgery (Ch=Chirugie, which is latin for surgery). These degrees are awarded for passing the surgical portion of the exam.
- In the UK the BAO, which stands for Bachelor of Obstetrics, is awarded for passing the Obstetrics portion of the exam and thus qualifying in obstetrics.
- The Ph.D. degree is a doctorate but is usually not associated with clinical practice or patient care. One very common exception is that of the Clinical Psychologist, who often have a Ph.D. or similar degree (unlike psychiatrists, who have an MD degree, Clinical Psychologists are typically not licensed to prescribe medications). Some physicians may possess both an MD and a Ph.D., though the Ph.D. is generally in an academic field involving research rather than patient care.
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.
PC Kids Corner:
- What is PC?
- Explaining your PC
- Managing your PC at home
- Managing your PC with a professional
- Living with PC
- For Parents and caregivers of children with PC
- Supporting PC Project and the PC Community
- PC kids and teens- The brilliant things kids with PC are achieving!