Children, teens, and their parents or caregivers can learn effective ways to care for and manage PC together.
PC can vary greatly depending on which keratin gene is affected (K6a, K6b, K6c, K16, or K17) and the specific genetic mutation. Even people with the same mutation may experience different symptoms or levels of severity. Because of this, there is no single approach to managing PC that works for everyone.
Since PC affects each person differently, individuals often develop their own routines for caring for their skin and nails. A treatment that works well for one person may not be as effective for someone else, even if they have similar symptoms. Finding the best way to manage PC is often a process of trial and adjustment, and those needs may change over time.
Fortunately, there are many at-home strategies that may help reduce pain and improve comfort. These can include using creams to treat cracks, soaking the feet regularly, and carefully reducing thickened skin. This section shares practical tips and approaches that members of the PC community have found helpful in managing PC at home.
Find ways to keep the feet comfortable
Many people with PC find that their foot pain becomes worse when their feet get hot or sweaty. For this reason, some prefer to wear open-toed shoes whenever possible to help keep their feet cool. Since PC affects everyone differently, comfort strategies vary from person to person. Some find relief by using ice packs to cool their feet, while others prefer soaking their feet after a long day.
Walking on hard floors can also be painful for many people with PC. Wearing slippers or flip-flops indoors may help reduce discomfort. Some individuals also wear waterproof flip-flops in the shower, while others find that a smooth shower floor is more comfortable. For those who cannot stand comfortably with bare feet, using a shower stool or sitting in a bathtub can make bathing easier.
Many people with PC also find it more comfortable to sleep with their feet outside the blankets. This can reduce pressure on sensitive skin and help keep the feet cool throughout the night.
“Sometimes with our son when his feet hurt at the end of the day, we would let him watch tv while soaking his feet in warm, soapy water. While we doubt that this actually helped his pain levels, it made him feel special and listened to. Sometimes children with PC, like us all, just need the extra attention.”
Shave off thick skin
The amount of thickened skin to trim and who performs the trimming can vary from person to person. There is no single approach that works for everyone, so it is important for each individual or family to find the routine that is safest, most comfortable, and most effective for managing PC.
Some people with PC prefer to remove thickened skin themselves because they know how much skin can be safely trimmed and feel most comfortable managing their own care. Others, particularly families with younger children, prefer to have thickened skin removed by a healthcare professional, such as a podiatrist or chiropodist.
As children grow older, they may gradually take on more responsibility for their own PC care, including learning how to safely trim thickened skin. Families should discuss the appropriate time to begin self-care with a parent, caregiver, or healthcare professional. A variety of hygienic tools are available to assist with skin care.
Children should never attempt to trim thickened skin on their own. Any trimming should be done with the guidance and supervision of a parent, caregiver, or another trusted adult.
Trimming Nails
Caring for PC nails is similar to caring for thickened skin. Everyone develops a routine that works best for their individual needs. Some people prefer to use an emery board to file their nails, others use nail clippers, and some use specialized tools to carefully reduce the thickness of larger nails, such as the big toenails.
All tools used to trim nails or thickened skin should be used with the guidance and supervision of a parent, caregiver, or another trusted adult. Over time, each individual and family can determine which tools and techniques work best for managing their specific PC symptoms.
Preventing Infections
PC itself does not cause infections. However, people with PC can develop secondary fungal or other skin infections. These infections are caused by germs, fungi, or viruses from the environment—not by PC itself.
Children with fragile or damaged nails may be more susceptible to infections because the skin and nails provide less protection against germs. Children are also generally exposed to more germs through everyday activities, making infections more common.
Some families find that soaking the hands or feet in a dilute bleach bath may help reduce the risk of certain skin infections. A commonly recommended mixture is 1 capful of unscented household bleach in 1 gallon (3.8 liters) of water. Always prepare a fresh solution for each use and rinse the skin thoroughly afterward. Before trying a bleach bath, it is recommended to discuss this approach with a healthcare professional to ensure it is appropriate for the individual’s skin and symptoms.
Treating Swollen Nails
Many babies and children with PC experience episodes of swollen, painful skin around the nails. While these episodes are often referred to as “nail infections,” many healthcare professionals believe they are not true infections. Regardless of the cause, swelling around the nails is a common symptom that can be uncomfortable and may require treatment.
Establishing care with a pediatrician, physician, or podiatrist who is familiar with PC can be very helpful in managing these symptoms. The information below provides a general overview of approaches that some families use to care for swollen nails. It is not intended to replace or contradict the advice of a healthcare professional.
Before beginning any of the steps below, the affected nail should be properly prepared.
Actions many PCers take when the Nail is “Ripe”
The following advice comes from a member of the PC community—a mother with PC who has two sons with PC. It reflects her personal experience and is not intended to replace medical advice.
“I looked at the picture, and the nails look very familiar. Both of my boys often developed swollen nails as babies that looked very similar. The nail on the left appears to be ready for drainage. One or both nails may be at the stage where the buildup of fluid can be released. I would be as gentle as possible and try one or both of the following approaches, depending on which works best:”
- Use clean (sterile), sharp, large nail clippers and see if I could make a hole in the nail. Probably start on the side, on the end near the tip. Do it when the baby is sleeping if possible. There will be pressure when the nail is first clipped and that can be very painful. So the softer the nail, the better and if baby is asleep, that’s good too.
OR - Use a sharp, clean (sterile) razor blade (I like a double-edged razor blade because it bends) and try to nick at the nail to make an opening, again from the side and end of nail nearest the finger tip. If nothing comes out, try near other areas. This may be a better way than the nail clippers.
- Whether a nail clipper or a razor blade is used, go slowly and gently and not too deep at first. The outer nail is “dead” but soon, inside the nail, there will be “live” nerve endings so be careful.
- Before trimming, if the nail doesn’t seem soft, soaking it first by putting the baby’s hand in warm water (not hot) for a few minutes will help. Also, after the nail is cut into and the pus comes out, soaking the nail again, or even running it under warm water will help.
The nail itself may fall off at some point once the nail starts to heal. Antibiotics may help the healing, but to heal quickly and to relieve the pain as soon as possible, getting the pus out is important and the pain relief will be almost immediate. Based on my experience, there will be pus in the nail, not clear liquid.
Also, baby pain reliever like baby ibuprofen will help as well. If I had to, I would give the baby some of that before trimming the nail. However, the greatest pain relief will come when that nail is gently cut into and the pus is released.”
NOTE: A topical antibiotic cream can be used after releasing fluid/pus (the same as for blister care.) Oral antibiotics may or may not be needed. If there are red streaks, it is important to immediately see a physician for antibiotics. Other times nails can be treated and healed without antibiotics. You will learn to be able to know at what stage the problem is and when to see a doctor. If at any time you are uncertain, see a doctor.
Follicular Hyperkeratosis (FHK)
These bumps, known as follicular hyperkeratosis, commonly develop in areas where the skin experiences frequent friction, such as the waist, hips, knees, and elbows. They are more common during childhood and often become less noticeable during the teenage and adult years.
Many families have found that wearing loose-fitting clothing can help reduce friction and irritation. Some people also use creams or lotions to soften the skin and the bumps. As the bumps soften, they may sometimes be removed more easily and with little or no discomfort.
Care for Cysts
Not everyone with PC develops cysts. When cysts do occur, they most commonly appear after puberty. Cysts are not usually painful unless they become inflamed, rupture, or develop a secondary infection, which can occur more frequently in people with PC.
Most cysts do not go away on their own without treatment. Depending on the size, location, and severity of symptoms, a warm compress may provide relief for some cysts. Others may need to be drained by a healthcare professional to relieve discomfort, although this does not prevent the cyst from returning. Inflamed cysts may sometimes be treated with a corticosteroid injection to reduce swelling. If cysts continue to recur or cause significant symptoms, surgical removal may be recommended by a healthcare professional.
Leukokeratosis
The white film that may appear on the tongue and inside the cheeks is caused by excess keratin. It appears white because it is moist, similar to how skin becomes white after being submerged in water for a long time. The medical term for this finding is oral leukokeratosis.
In babies, oral leukokeratosis is often mistaken for thrush. However, unlike thrush, it is not caused by a fungal infection, so antifungal medications are not effective. It is also important to note that oral leukokeratosis is not the same as leukoplakia, a separate condition that can be associated with precancerous changes.
Problems Feeding
Some babies with K6a-related PC may have difficulty feeding because sucking appears to be uncomfortable or painful. Families have found that using very soft bottle nipples with larger openings can sometimes make feeding easier.
Some parents have also found that gently expressing a small amount of milk into the baby’s mouth may encourage feeding when discomfort initially makes sucking difficult. Although feeding may be challenging at first, many families report that babies gradually become more comfortable over time.
For many infants, discomfort with sucking improves significantly during the first year of life, with many parents noticing improvement within the first six months. Families who have concerns about feeding should work closely with their pediatrician or feeding specialist to ensure the baby is receiving adequate nutrition and support.
Tips and Tools for PCers
Tips and Tools, also known as the PC Wiki, brings together advice from people who have PC and professionals and links to the appropriate sections are included below. Here are some links to useful information on:
