Pachyonychia Congenita Conditions

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.

FIRST BITE SYNDROME

“First Bite Syndrome” is the only term we have found that comes close to describing the short ear pain for some PC-K6a children. We believe the pain is related to salivary glands, but have been unable to sustain an in-depth study, partly because there are so few patients, and partly because the condition usually diminishes greatly after about age 16. We often don’t know of the problem from patients, as parents take the children to an ENT or other ear specialist assuming it is ear pain and not identifying it with PC.

K6a patient “My son does get the ‘ear’ pain though, it is usually when starting a drink/meal. It’s quite intense, and he likes us to put pressure on his ears for a few seconds, then it seems to pass.”

K6a patient “I remember this very clearly, I used to cover my ears and put my head down on the table (if there was one) and just try to think of anything else in the moment!”

K17 patient “My daughter has K17 and has a lot of “unexplainable” ear pain””

K6b patient “I used to experience this when I was ten years old but never associated it with PC. I also suffered with ear ace all of which I grew out of.”

K6a patient “I use to have this but never realized it was a symptom of PC. I had it until I was around 20. I use to push my ears with my fingers to relieve the pain a bit . But ultimately not much you can do , but wait for it to subside x”

K6a patient “My k6a daughter had it pretty bad as an infant but it really stopped bothering her by the time she hit toddler stage. Maybe her love of food outweighed it? 😂. She is now 9 and no longer has any discomfort at all- I’d say by 4 it was completely gone.”

K6a patient “Hello, i am the daughter of Maikel kok and i have had first bite syndrome. Now i am 16 years old and the first bite syndrome started when I was 12. First I tried chewing gum. It helped a bit but not much. Now I have a medicine called isotretioïne it is usualy for acne, but it helped me to get rid of the first bite syndrome. When I stop with the medicine, the first bite syndrome comes back. I don’t know if this medicine works the same on a other person, but I hope I helped you a bit. Greetings Mari”

K6a patient “I had this all through my childhood. Didnt know it was connected. Then all of a sudden it stopped overnight?”

K6a patient “I has first bite when I was a child, my daughter had it as well. My grand daughter now has it.”

K16 patient “It happens to me about once a month for about 20 seconds each time, I never knew it was pc. Also it never has anything to do with eating for me. Just a random pain that hurts like hell for about 20 seconds nothing has ever helped.”

K17 patient “I am k17 and 56 years old and it still happens once in a while”

K6b patient “What a perfect representation of the pain. K6b here. I’m 27 and have known this my whole life but never knew what it was associated until the last year. I’ll often apply intense pressure to the area behind my ear (above my jar) and open and close my mouth (like I’m popping my ears) until it subsides.”

K6a patient “My daughter still suffers. Has it when eating, but also with temperature changes, and when surprised by something. Just as everyone describes it- intense pain near jaw.”

K6a patient “Mi hija (k6a – 6 años) tiene ese dolor. Si bien dura poco tiempo, es muy intenso. Si alguien encontró una manera de atenuar el dolor, agradeceré me diga cómo”

K16 patient “I’m K16 and I still get this once in a while. I had no idea it was PC-related.”

K6a patient “I have pc and still to this day suffer from occasional first bite syndrome! It really is painful in the moment. My middle daughter, aged 11 also has this and finds it quite severe. It’s also very frequent for her. We would love to know more about the cause of this mysterious, painful, syndrome. 😩”

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

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Dr. C. David Hansen, MD, “Cracks in the outside layer of the skin are usually called fissures. These occur with thickening of the stratum corneum (outside layer) and skin dryness that allows a split to form. Many treatments have been mentioned including Krazy Glue, Super Glue, Dermabond, Aquaphor, Vaseline, Neosporin and many others. The key to healing is to remove as much of the thick skin as can be pared safely. Following removal apply an ointment or glue that prevents evaporation of water from the skin (this seals the crack). I usually use an ointment like Aquaphor and cover overnight with an adhesive bandage. This can be removed in the morning and an ointment reapplied. Repeat the process until the “crack” is closed. Always watch for secondary infection although this is uncommon. Once the area has healed it is helpful to use a product that prevents recurrence of fissures such as salicylic acid cream or ointment, 40% Urea or Lactic Acid. These products work to remove the thickened stratum corneum and reduce thickness of this outer skin layer. Regular use will help prevent new fissures from forming.”

PATIENT TIPS & COMMENTS FOR CRACKS

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K6a patient “I don’t know if this will help, but when I was having a bad bout of cracking with psoriasis on my hands, I relied HEAVILY on Newskin. It stings like crazy, but it seals the cracks and puts a protective coating so the wound doesn’t hurt so much. My husband won’t touch it, but I would buy it by the gallon.”

K6a patient “I found that taking Krazy Glue brand super glue, and applying a small dab to the ‘cut’ then pinching the skin together with tweezers, the cut will be almost permanently glued together with no further pain and it will stay this way until the ‘cut’ is healed. I play basketball in the winter and finding this out has really helped me manage this one aspect of pain. I had always heard that super glue was originally invented as a replacement for stitches and perhaps this is actually true. At least this has worked for me.”

K16 patient “I went three years with very big splits that would bleed and tear every day. Blue Star Ointment is the only thing that healed up the cracks on my feet. I put it on my feet at least three times a day and wore two pair of socks. The splits were GONE in about one week, and wearing the socks with the ointment helped with pain at night and walking in the morning.” Blue Star Ointment Website

K16 patient “I would suggest using Aquaphor, it’s over the counter and is available at most drug stores in the U.S. This has worked wonders for me! I suggest applying Aquaphor on the entire foot with socks every night before bed. The socks will give your feet a chance to absorb the ointment. Aquaphor is routine in my evening schedule, usually right after I brush my teeth to go to bed. Ever since I have started doing this, I have not gotten any cracks!!! When I started this technique I had deep cracks and they went away within three nights of treatment.”

K6a patient “My heels are one of the most sensitive parts on my feet (and itch all the time under the calluses … but that’s another story). I, too, get deep cracks in the heels, which are extremely painful. My only solution is to keep the cracks as moist as possible. I cover the cracks with a medicinal ointment, like Neosporin (which may be unfamiliar to someone not in the USA). And then I cover the moist areas (cracks) with a gauze bandage wrap. The gauze wrap tends to keep the area soft and moist, which reduces the pain of walking on the feet while the cracks heal. I put the ointment on the cracks at night, too (unwrapped), which tend to keep the area soft. It sometimes takes days for the cracks to heal.”

K6a patient “I second exactly what [is suggested above.] A topical antibiotic such as neosporin provides the benefit of killing off any bacterial which might be hanging around – which is definitely beneficial given that the skin is compromised at a crack. I have found, however, that a petroleum based product (such as Aquaphor) honestly helps just as well to promote the healing and comfort of any cracks. Covering the areas is a must, too.”

K6a patient “Just in the last few months, I too have been suffering terribly from severe cracks in my heels. So severe that for the first time ever I literally had to take a sick day from work. It feels like there is a blow torch in my heels. Many of you know that I see a podiatrist (same doc for 28 years). We have tried a number of prescription creams recently. Here is what my physician prescribed that I have used over the last few months for the severe cracks: Voltaren Gel (diclofenac sodium topical gel) 1%, Kerol ZX (50% urea), Lidocaine Ointment USP, 5%. With all the prescription ointments, I echo the others that in the end the neosporin, bactroban and Vaseline usually work the best. I’m also trying to wear a heel cup but although it helps me keep the heels moist, it is uncomfortable.”

K6a patient “I very often have this situation especially on the heels, where I always keep cutting as much as possible and suddenly blood come up, and then I noticed that for mistake I had cut it too deeply. There is nothing to do at this point, it will be hurting for 2 or 3 days, and then as the cracks grow up again, the pain will decrease.”

K16 patient “For some reason it’s been several years since I had any significant cracks (or blisters) on my feet. But I had a lot of them when I was younger. At that time, I used Vaseline to keep the cracks soft and just tried to avoid walking, and they would soon heal by themselves. I don’t know how thick the callouses are on this person’s feet at this point, but soaking to soften and then carefully cutting the callous lower around the crack also helped me. Also, I cannot walk at all without a pair or two of soft insoles in my shoes – I like odor eaters. Maybe some padding like that will help this person, too, if walking can’t be avoided.”

K6a patient “Sores on feet get dry and painful. Vaseline or generic petroleum jelly. Put it on feet before putting on socks each morning. Use after trimming and washing sores. Addicted to Vaseline. Keeps sores from snagging on socks and prevents drying and cracking which hurts or is uncomfortable.”

K16 patient “These cracks can be very painful and add a lot of trouble to what we experience already. Here is how I use to treat them. I am now using on a very regular basis (every night before I go to bed) a cream which has 15% of Urea and a dash of “Nachtkerzenöl” (=evening primrose oil) in it. This helps keeping my skin elastic. But this is what I suggest you could try and what I used to do quite successfully for years: Put some healing cream on and into the crack and most important is to put a plaster over the crack tightly, so if you put weight on your heel the crack doesn’t constantly crack open again. You might even use these lasters without the padding on. Main thing is they stick well and don’t come off easily. Use the healing cream generously. And what a doctor explained to me and makes sense. Bathe feet in a tub with lukewarm water adding generously highly antibacterial killers like. {Note: Dr. Leachman has recommended using a little bleach in the water.} This is important because in these cracks bacteria can gather very easily and slows down the healing process or prevents it all together. Additional to that of course one can wear socks (to help keeping plasters in place). Even more important I found instead of wearing too soft inlays to wear shoes or inlays that are shock proof.”

K6a patient “Occasionally I get cracks in my heels (K6a), and can usually just cover it for a few days with New Skin (a liquid bandage) until it closes up & heals.  This crack hasn’t healed in over 3 weeks & is getting bigger & bigger.  It bleeds a lot, too.  Of course, every time I walk & put any pressure on my heel, it tends to split open again.  I’m thinking of going to my Dermatologist & asking her to suture up this crack.  Has anyone had stitches or sutures used before for such a purpose?” (see photo above)

Unknown “I glue mine together with nail glue. Works an absolute treat.”

K6a patient “I used nail glue before, make sure it is non-toxic. I used gorilla glue, too. Be sure and clean the crack with peroxide before using the glue to clean out the germs.”

K6a patient “I find that when i get crack I have to stop trimming or else the crack never heals, keep a bandage on it 24/7 and make sure it doesn’t dry out.”

K16 patient “I don’t know if they can suture the crack if the skin is calluses. I have cracks in both of my heels. What you see at the bottom of the crack is your normal skin beneath the callus. The hard edge of the crack causes most of the discomfort in my case. I try to keep these cracks trimmed pretty low but at times a sudden impact when walking can cause the crack to expand. The only success I have is to put Vaseline on the crack and cover it with a band aid or two. The Vaseline helps to keep the area moist which benefits the original skin beneath and the hardness of the callus edge. Good luck with whatever way you go with this. I’m sure there will be others who will give you other options.”

K16 patient “They normally can’t stitch it up unfortunately. They would likely use surgical glue to try and help it out, but it’s just glorified super glue. There was a post not too long ago on here with someone asking about a crack in their sons heal and there was lots of good tips/ tricks on there that might be helpful to you. Best of luck!”

K16 patient “Super glue works great!”

K16 patient “Unfortunately, sutures won’t help there. Make sure it’s cleaned out really well and soak in bleach. Cut down the dry edges as much as you can — I find when the edges dry out and harden they pull the edges apart. Apply super glue, let dry then put aquaphor/Vaseline over the area. Place a bandage (try a piece of gauze secured with bandage tape wrapped around your foot) then put a sock on. Try your best not to let it dry out. Your diet can also affect wound healing. Cut back on sugar which can be inflammatory and salt that can make your feet swell. Protein is needed for wound healing so make sure you’re getting enough of that, too!”

K6a patient “Slather it in Aquaphor and bandage it twice a day. It’ll probably take a few weeks to heal but it will heal. A dermatologist taught me that trick and it works. I had a crack like that for over a year.”

Unknown “Ouch – I put soft candle wax in mine it seems to be the only thing that works for me. It’s a lovely Liz Earle fragranced one its really soft wax and stays in. I hope you get it sorted they are so painful x sending.”

Unknown “Ouch! Do you live anywhere near a beach? If you can collect some sea water or walk in it daily it will help a lot, I’m convinced those cracks seem to get a bit fungal and the sea water clears them up or at least clean it to the point of gluing it up. I feel your pain, I had one under my toes for months, I cleared it up with medical manuka Honey and the beach.”

K16 patient “Bepanthen!!! It’s for wound and healing in Austria and Germany. Maybe you can order it in the internet or find something with the nearly same ingredients. It heals wounds in a few days and if you put it every day on your feet, there wouldn’t be cracks any more and everywhere on your feet, it doesn’t hurt not so much because it isn’t so dry anymore.” Bepanthen links on Amazon Germany or Amazon US.

K6a patient “I get them a lot and when I soak them in Vinegar water, then put the treated gauze and wrap them with the self seal wrap . The feel so much better. My podiatrist told me one of the problems was that we seem to have a fungal on our skin that makes it all worse.”

K6c patient “My husband suffers with splits on his heels he wears these socks (Amazon – soft moisturizing gel heel socks) which keep his heels soft – we have used superglue but not on a split which is bleeding. Keep paring down a little at a time regularly seems to work and hasn’t had a split for a while.”

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 about having PC is the pain that comes from just day-to-day activities. The worst part about it for me is just not being able to do the simple tasks that other people can do, such as just like walking to class, or being able to help out with, like, moving things. I always have to be really careful about how much I do every day, and sometimes that limits my ability to interact with other people, to participate as much as I want to. And then, even if I do hold myself back, I still have to suffer the repercussions for it.”

Another quoted, “The pain just consumes you constantly. The pain has been so bad to where I would just be crawling around my house for a couple of days, and at that point my feet were in terrible condition.” And another described the daily pain factor “The worst part about having PC is that unknown pain factor. I get up every single morning and get out of bed. That first step on the ground, I know it’s going to be painful, and it is, and I dread it. I lose my balance because the pain is so bad. It’s hard to walk. The second thing is the fact that I’m so dependent on other people to help me with everything.”

“You kind of have to pick and choose what you do. I have knee pads. I’ll crawl around the house at night and try to save my feet for the next day. You learn to adapt and do things quite a bit differently. I’ll sit or kneel to do things that most people would maybe stand to do. Standing in line at the airport, walking, taking your shoes off and walking through the scanners and stuff is horrible. It’s like walking on glass, quite literally.”

“The biggest thing I deal with every day is ridiculous, overwhelming, debilitating pain. Just the thought of walking in a mall or going shopping causes me stress.”

One PC-K6a patient shared the heart-breaking story of his young adult son: “He went away to college, and along with studying, he also blazed a path in trying to find a cure for his own pain. It involved pain clinics, and he received some kind of—nothing to deal with his real pain, but like Lyrica, and Gaba-something. I don’t know. He was able to find opioids, which apparently people will sell you, but doctors don’t. No one was willing to prescribe them for his pain, so he went out and found his own. The pills don’t last, so then he had to go on to find heroin, and he used heroin, and he had an overdose, and he was brought back from that. That was two years ago. And he fought his addiction, but he lost January 3rd. I came and found him in his room.”

CARING FOR PAIN

One PCer stated, “We want PCers to be able to connect to the pain management community so they don’t have to deal with pain in isolation.”

Dr. Sancy Leachman emphasized, “We want any pain management to be safe, credible, well-defined, and something as a group we feel comfortable referring to.”

The 2007 PAB Patient Outreach Working Team noted that often “CARE = pain management” and Dr. Sancy Leachman has also noted that regular care for the feet is the very best pain management tool for PCers.

PATIENT TIPS & COMMENTS FOR PAIN

K6a patient: “I recommend Lidocaine Hydrochloride for pain relief. A wound care doctor prescribed it for me. Applied directly to the sore area of my foot. 4% dosage liquid with prescription. 2% dosage as gel is reportedly available off the shelf at drug store.”

K6a patient: “This past fall, for no reason that I could find, my feet became incredibly painful — all the time — even when I wasn’t walking. My calluses looked just fine and I had no blistering. I couldn’t understand why they hurt so incredibly bad. It made me want to do nothing. For me, pain becomes as much a mental issue as it is a physical issue. My whole mentality gets wrapped up in the pain. The reason I’m telling you this is not to feel badly for me. I am no doctor, but sometimes I wonder if part of PC includes having this unexpected, unexplained pain. This wasn’t the first time it’s happened. I remember the first time I do remember it happening, many years ago. I went to my doctor who knew my feet very well. He looked at my feet and said, “But they don’t look bad.” My doctor had seen my feet much worse and so when I made that emergency appointment because of the pain, my doctor expected to see my feet in worse shape. I felt a little badly at his comments, but also realized there was nothing he could do and that my feet for no reason that any of us could figure out just plain hurt — more than their usual PC pain. This happens to me maybe several times a year — not sure — but this last time, it lasted about a month. Something that helps me with the pain is to get circulation in my feet and my legs. This will sound so strange, but sometimes when my feet are really sore, I ride a stationary exercise bicycle. I don’t have calluses on the arches of my feet, so I can pedal the bike quite comfortably. For some reason, this seems to help my feet feel better. If it’s in the middle of the night, I often do leg lifts, or raise my legs off the bed and bend my knees — just anything to get the blood flowing. There’s a ton of leg exercises that I can do while on the floor and they all seem to help. I don’t know if it’s because I used crutches a lot and also a wheelchair in my home — I have a nifty electric one — but my feet can get extra sore from not using them. Which is difficult since, well, our feet hurt! It’s hard because when I’m hurting really badly, I often want to just lie down and not move. And that’s true that sometimes rest is the only help. But getting the circulation going has been a big help for me.”

??? patient: “I too get the sudden unexplained bouts of pain, especially with my feet. Even when I haven’t been walking about or putting my feet under stress, I still get really bad pain associated with the pressure point in my feet. Prof E O’toole has just started me on a treatment of local anesthetic (Linocaine 2% gel under a hydrocolloid plaster). This has done wonders to take the pain away, but I would advise not using it over the entire foot as this can cause balancing problems because of the loss of sensation in the foot. We need a level of sensation to actually know where and on what our feet are walking.”

K6a patient: “I manage most of my pain with over-the-counter pain relievers like acetaminophen (Tylenol) or non-steroidal anti-inflammatories (like ibuprofen (Advil/Motrin)). I know that not everyone is keen on taking pills though. It’s my understanding that it’s physiologically easier to PREVENT pain than to GET RID OF pain, so I typically take them before doing excessive walking. Or, if I’m not having a good week, I’ll take them first thing in the morning. The anti-inflammatories are especially helpful when there’s actually blistering. It seems to make the areas less “angry” (red, hot, painful).”

K6a patient: “I use Tiger Balm (full strength Thai mixture) and rub it into my ankles so it feeds the whole foot.”

K6a patient: “Yes, sometimes for no clear reason for me, my feet get in deep pain. The only thing that really helps is to avoid walking for a few days. During this period, I will give time to my feet to relax in order to close the open sores and get access to drain the blisters. In my case, I have already registered some facts, besides walking too much, which make my feet worst:

• Specific foods: too much spice, chocolate, industrialized food, etc. — everything that brings pain to my body will bring blisters to my feet.
• Stress; few hours of sleeping.
• Dry weather (since I live in a warm country, my feet are used to warm weather, and it will go really bad if I move to dry weather)”

K6a patient: “The best treatment I have experienced to reduce pain for blisters and calluses are: BLISTERS (appear on every travel, Christmas period which coincides with summer in Chile, etc.)

1. Puncture the blister with a needle and thread. Leave the thread to allow draining for hours.
2. Soak the feet in a solution with permanganate of potassium. This will leave the skin black — If you don’t want to have your feet black, you can replace the permanganate with marine salt and you should repeat the soaking for several days. The blisters especially will be black, but it will help to dry them in one day (one time is enough).
3. On the blister, apply celullase with mesmicin to prevent infection and help regimenting the skin.

CALLUSES: Go to a podologist. In Chile, they study only for one year and I always thought it was normal to leave their office with a lot of pain because they trimmed too much. Now, I found a podologist who studied in Argentina, where they obtain a university degree. You can feel the difference. What he does is put a softening liquid, then with a bisturi he cuts a part, and then uses an electric disector (which burns the root of the callus) and removes the callus with the bisturi with only one cut. He has an assistant who holds my leg still. He repeats the procedure for every callus. At the end of the session, we finish all tired but with no pain on my feet. He always give me the last hour because he must have all the required time to do his job slowly and also because he says they need to rest after working on my feet. I am now using a cream that helps me a lot: Laboratiner vichy — podexine — podiatric care — reconditioning care for dry feet — restructuring ceramides.”

K6a patient: “I was having such constant pain, especially at night, and even if I hadn’t been on my feet a lot. It was suggested to take pain medication, morning and night for a while, to break the pain cycle. And it worked! It was also suggested I not put my feet into cool water to ease the pain which I usually did, as it expands the outer layer (strata corneum) and could make it more sensitive. Using cool gel packs are better. Pre-dosing medication if I knew I was going to be on my feet a lot that day also helps.”

K16 patient: “Sometimes, for no reason, I have a big pain. I have to hydrate my skin. First, I put my feet directly in very cold water. Immediately, at least 80% of the pain will go away, but it comes back after some time. Afterwards, I put some Vaseline all over my feet to hydrate them. I do not put any socks or shoes on for some time. I also take some drugs. In France, it’s some paracetamol or similar to this. I hate to hear that someone has a lot of pain and does not know why. If I walk and I have pain, I at least know why.”

K16 patient: “I find the only thing that works for me is not to walk, or walk very little for a few weeks. It seems that even if I’ve not been on a ‘long walk,’ sometimes I think you can overdo it over the course of a few weeks or months and it eventually catches up with you. To me, it seems that I am doing unseen damage below the surface of the skin and that’s got to come out sooner or later. Also, tension or stress makes pain worse for me, so a few relaxation treats help too. “

K6a patient: “I use anti-inflammatories or enzyme inhibitors such as Vioxx or Celebrex. I take one each night before going to bed and cannot function without them.”

K6a patient: “He used an anti-inflammatory medicine that helped his feet for long walks and every day use of feet. It worked extremely well.”

Swimming

K16 patient: “Swimming makes my feet sore but has never made their condition any better or worse.”

??? patient: “Swimming in a pool that has chlorine helps my feet.”

K16 patient: “I try to keep fit by swimming and cycling. An overall good condition probably helps manage foot pain.”

Airline foot exercises

K16 patient “For pain relief, do airline foot exercises.”

For examples, see United Airlines Inflight Exercises.

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 does not cause infections. However, it is possible for those with PC to get a secondary fungal infection (such as a nail infection or athlete’s foot, etc.). An infection is caused by germs from the outside, not from something internally. Children with fragile nails are more susceptible to infection because they don’t have the same barriers as others, but the infection is not caused by PC. However, infections do happen because it is often easier for germs to get through PC skin and nails. Infections are more common in children than in adults because children are more exposed to germs (through putting their hands everywhere, not washing well, etc.).

An anti-fungal treatment will not improve the PC condition; however, it may work well to treat a secondary infection. Most of the drugs are not designed for long term use; they are designed only to treat an infection.

Preventing Infections

“Daikins Solution can be used; however, just as effective and less expensive is to put 1 capful of bleach (unscented, plain household bleach) into 1 gallon of water then soak. This kills yeast, which causes fungus and viruses. It is powerful. Use a fresh batch each time, as it loses potency if stored. Rinse after using. Apply Vaseline while still wet.

Question: What about vinegar instead of bleach?
Answer: It kills yeast, but it stings.

Question: What about peroxide?
Answer: Not as effective, plus it causes tissue damage.

Question: What about witch hazel?
Answer: Okay, but it has lots of alcohol and it dries the skin.

Question: Instead of using Vaseline, what about A&D or Aquaphor?
Answer: Okay, but more expensive and likely not really more effective”

Antimicrobial Bleach Bath

by Dr. Leonard Milstone, 2002

Aim for a 0.05% solution of hypochlorite. Laundry bleach contains 5% hypochlorite.

Use 1 ounce bleach in a gallon of water to give 0.04%. (2 tablespoons) Or put 30 ounces (about 4 cups) of bleach in the average 30 gallon tub. If you only fill the tub half full of water, use two cups of bleach.

If this concentration is irritating, it can be reduced to 0.01%.

Soaking should be for at least 30 minutes, 1-2 times per week.

NAIL INFECTIONS

Swollen Nails in PC Babies – we call these infections, but most physicians say this is not an infection. Whatever the right term, many babies and children with PC have this problem at times. If you have a relationship with a pediatrician, physician or podiatrist who understands PC, that is always of great value. This is not intended to contradict medical advice in any way. The nail must be ready before the following steps can be taken.

Actions many PCers take when the Nail is “Ripe”

From one of our PC patients (a mom with PC who has two boys with PC) may be helpful. This is not medical advice, but experience advice.

“I looked at the picture and the nails look very familiar. Both my boys often got infected nails as little babies and they looked a lot like these nails. The nail on the left looks “ripe” right now. Both nails may be ready to have the pus released. I would be as gentle as possible and try to do one of two things (or both, depending on which thing works best):

1. 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.
   
2. 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.

Suggestions from other PCers

K6a patient: “When my nails are infected, they are red, swollen, and filled with pus. The nail pulsates and is extremely painful. I trim when I feel the twinge of infected nail. With children, you won’t know until it’s too late. Sometimes, you can trim and avoid the swollen nail. Many times, you must wait until the nail “ripens.” Then, soak for a long time in very warm water until the nail is very soft. A gentle slice with a sharp razor blade may be enough to draw out the pus. Sometimes, an especially thick nail will need the help of large nail clippers, but pressure is involved with those, so if you can get the pus through the nail with a razor blade, the pain is less severe. Once pus comes out, soak again — we like the bubbly Hydrogen Peroxide. Then, add an antibiotic ointment. If the infection is too bad, it will — on occasion — need a prescription antibiotic. It is a great relief when the pus comes out. Sometimes, it’s not enough and, on occasion, red lines have gone up the finger. In that case, an immediate trip to the doctor for an antibiotic is necessary.”

K6a patient: “If the nail area starts to get red, soak it in warm, salty water or warm solution of Epsom Salts as often as possible. Sometimes, prolonged soaking softens nails so holes form spontaneously — this is the best outcome. Soaking also relieves symptoms without needing antibiotics or lancing.”

K6a patient: “Swimming, for us, often results in nail infections.”

K6a patient: “We put Sally Hansen’s Hard as Nails (a clear polish) on nails after sanding them. We think it makes the nail more durable and less prone to infection.”

K6a patient: “Infected nails are very painful. We can feel our heartbeats in our finger and it’s very hot. We wait for the nail to mature (take analgesic syrup to calm the pain), and once the pus is assembled, bore with a needle and disinfect. It is a great relief when the pus comes out.”

K6a patient: “I found out from one of my relatives that she was taking a strong medicine (very expensive as well) recommended by a dermatologist she met. She has been taking this medicine daily for the past 4-5 months, I think, and the interesting thing is that her thickened nails are healing pretty well. I went to see her and I saw that her thumbnail was almost leveled to the skin. According to her, this same nail was really thick before she starting taking this medicine. The medicine’s name is Seritral.”

• Comment 1 (PC Physician Panel member; Dermatologist): “Seritral is an oral anti-fungal agent and the excipient is just the inert material that holds the pill together. The name of the anti-fungal is itraconazole and it does work well as an anti-fungal, but patients using this medicine should be monitored for possible liver toxicities, especially if they receive it for a longer period of time or at a high dose. The anti-fungal will rid the feet of the fungus, and if there was a fungal infection going on there, it may improve the condition by reducing the “trauma” to the feet, but will not get rid of the problem altogether because it doesn’t change the genetic features of the skin. It is also remotely possible that there may be a second effect of the drug, in addition to the anti-fungal effects, that could help to improve the condition (but not cure it), but this has never been studied and so I would be very hesitant to draw that conclusion.”

See also Medications & Topicals for Lamisil and Tea tree.

PATIENT TIPS & COMMENTS FOR NAILS

NAIL CARE FOR CHILDREN

K6a patient: “Trim a baby’s nails when it is asleep or relaxed. Use the sharpest pair of nail clippers you can find, and don’t take off too much at a time. Then, file the nail smooth in one direction only. Filing back and forth seems to make it sore. The more we messed with the nail, the more likely we were to have problems. Groom their nails about every 2 weeks. The nails are more noticeable when they’re longer, but it’s the balance between “short enough” and “not too often.” Then, apply a nail polish top coat or nail hardener.”

K6a patient: “I trim regularly using large nail clippers. You should trim PC children’s nails every few weeks using large nail clippers and razor blades. Soak the nails in water first. This seems to ward off infectious nails. You can sometimes feel a twinge in your nail to warn of an oncoming infection. Trimming immediately can avoid the problem altogether. I never get infected nails as an adult, but my young children still do.”

K16 patient: “Wait until she is fast asleep — that is the only way I’ve been able to do my daughter’s feet, and that is how my mother did mine. I have about 45 minutes to do it before her sleep gets lighter and it gets impossible, and the feet are dry by then, but at least she’s still for a moment. Maybe you could try it, too. Hope you find a way that works!”

ARTIFICIAL NAILS

K17 patient: “I have really bad nails, but manage to disguise them by filing them flat and putting false nails on.”

K17 patient: “I always wear false fingernails. The big toe nails on both my feet are also false. You can still see the thickness from the side, even with tips.”

??? patient: “My sister and I have been filing down our nails since we were pre-teens. I have applied artificial nails on my own since I was about 18. We both have had acrylic nails put on professionally (when they first came out) but they didn’t work out…. it took too long, was embarrassing, and cost too much. So, I just watched what the manicurist did and I knew I could do it myself. To make a long story short, I am now 46 and I am still wearing artificial nails which I redo religiously once a week. My sister, who isn’t as vain as I am, doesn’t wear them anymore because they won’t stay on with the type of nails she has.

Even though mine don’t look perfect, they do fool most people! Now that they have come out with artificial toenails I also apply a fake one on my big toes and it feels great to wear sandals! Of course there are a couple of down sides to wearing false nails, but I think it’s worth it and it has made me feel more secure throughout my life.”

??? patient: “I manage the condition by using a dremel tool and thinning them out, and also by going to a nail salon to have gel tips put on them. It took awhile to find a good nail tech who has a good attitude and is very patient with my condition. I usually get gel nails and they last several weeks and then I have to remove them. Sometimes, if I am too ruff with my nails or accidentally smash them while the artificial nails are on, they will get an infection so that’s another thing I have to manage. Infections are very painful and require me to use the dremel tool to take off as much of the fake nail as possible and sticking a needle into the nail bed until the puss oozes out. It is a pain I have learned to deal with because when I was younger I would have a few nails at one time infected and they would throb to the point where I felt it would be better if I could just cut my fingers off. After the puss is released, the nails kind of shed their own dead shell and a new nail grows. My feet are affected by PC as well, and I have to dremel them too. If I don’t get enough sleep, the planters warts will hurt and I will have to dig at them. Not having enough sleep ruins my day because everything on my feet aches — the calluses and everything. In the past when I have painted my nails after making them shorter and filing them down, it’s as though the nail soaks in the nail polish and it starts to hurt and feel horrible. It is so hard to remove nail polish from PC nails because the nails soak it up like they are a sponge.”

NAIL REMOVAL

NOTE: If nail removal is not done properly, they will grow back. We have had mixed reports for nail removal.

The following article reviews cases of nail removal from the IPCRR. CMC DeKlotz, ME Schwartz, LM Milstone. Nail removal in pachyonychia congenita: Patient-reported survey outcomes. J Am Acad Dermatol.76(5).990-992.

K16 patient: “I had my toenails removed. With the first surgery, all the toenails grew back exactly the same. It has taken 4 attempts to permanently remove the nails, and each time I had it done, a few less nails would grow back. Now I am left with pain free toes and the nail bed has been replaced with regular old hard skin which is much easier to shave off. I still have 2 very stubborn nails left now (4th toe on each foot) which seem to refuse to stop growing. The removal of the toenails is not too bad with some strong pain relief immediately after the surgery. The pain seems to go within hours.”

K6a patient: “My nails are removed so they are a soft, kind of a callus layer. I use an emory board and file them smooth. Then, to keep from splitting or from skin splitting, I use a nail hardener. Days later I use Vaseline.”

K6a patient: “My doctor shaved the nail bed on my big toes to see if it would make them grow flat. It actually made toe nails worse — quite lumpy. It was a painful operation.”

K6a Patient: “My big toenails are always swelling and falling off, causing a lot of pain. I had both the big toes on my feet removed. The procedure was not that big a deal. I spent one night in the hospital with a bit of pain (mind you I was on a bunch of pain killers) but not much worse then when they would swell and fall off. For some reason, none of my other toenails ever gave me trouble. The procedure didn’t work — my nails grew back. However, the two big toe nails don’t swell as often. I don’t know if it’s a coincidence, but since the procedure (at least 10 years ago) they have only fallen off 3 or 4 times.”

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 Milstone explained that this is just excess keratin. It is white because it is wet/moist (like when you leave your fingers in water for a long time and the skin turns white). The medical term is oral leukokeratosis. It is not leukoplakia, which is a pre-cancerous condition. In babies, oral leukokeratosis can be misdiagnosed as Candida albicans and may cause difficulty in sucking.

Angular cheilitis (inflammation and fissuring sores at the corners of the mouth) which is sometimes secondarily infected.

Laryngeal involvement is a less common feature, reported primarily in young children. It might be symptomatic but usually presents as hoarseness, stridor and, occasionally may cause life-threatening respiratory distress requiring medical intervention.

CARING FOR MOUTH, TONGUE, & LARYNX

Oral Leukokeratosis normally doesn’t cause pain or any issues. Some people do nothing. Others use their teeth to scrape their tongue or brush it with a toothbrush or tongue scraper.

We have found out from surveying patients about Angular Cheilitis that “An antibiotic usually helps; even neosporin right away can help. Bactoban is the next level and does work well. However, there is a new product that we’ve had great reports on. It is called AltaBax in the USA. It is a more potent or higher level antibiotic and requires a prescrption. The 3 patients we know who have used it have had excellent results and the sore cleared very quickly. However, it is very expensive (like $60 for a small tube). A little goes a long way, and the physician was able to give some samples which helped.”

Laryngeal Leukokeratosis in PC

Dr. Eli Sprecher, “The most important thing to do in patients with laryngeal involvement in PC is to try to avoid any surgical intervention (which often leads to further aggravation), unless of course air way is compromised. When we reviewed previous cases, our impression was that every intervention just triggers further regrowth of the hyperkeratotic tissue.”

Dr. Edel O’Toole “Intervention with laser or debulking makes it worse. The laryngeal leukokeratosis usually gets better as the child gets older. There is no evidence that oral retinoids help substantially with the keratoderma of PC (although some patients do take them intermittently to lessen callus, but at the expense of skin fragility/blistering). I am not aware of oral retinoids being used in a child specifically for the larygeal leukokeratosis.”

Goldberg I, Mashiah J, Kutz A, Derowe A, Warshauer E, Schwartz ME, Smith F, Sprecher E, Hansen CD. Symptomatic Mucosal Involvement in Pachyonychia Congenita: Challenges in Infants and Young Children. Br J Dermatol. 2019 Nov. 182(3).708-713.

PATIENT TIPS & COMMENTS FOR MOUTH, TONGUE, & LARYNX

K6a patient: “I brush with a toothbrush to keep the white layer from getting too thick. It doesn’t ever take the whiteness away, but it does seem thinner and prevents excessive build-up.”

K6a patient: “I don’t do anything except bite off the inside of my cheeks when they grow too much.”

??? patient: “I brush my tongue as well as possible.”

K6a patient: “I chew the stuff off.”

K6a patient “Hi I just wondered if anyone had any advice for the mouth, my daughter is 6 and her tongue is so thick on the sides she’s crying it’s hurting. She’s brushed it with a toothbrush but it’s making it worse. Does anyone else have this? Thank you”

K16 patient “I have had troubles with my mouth my whole life and a few things that have helped is using an extra soft toothbrush and plain toothpaste for brushing. I like Colgate as it does not irritate my mouth like Crest and some of the other brands. Sometimes swishing with warm salt water helps. When it flares up with multiple sore spots, I skip brushing and just rinse daily with Peroxyl, which helps with healing. She is probably too young for that, but I think Orajel makes a sore mouth rinse for children. If you are unable to get relief for her at home, you could check with her dentist to see if he might have something that can help. My dentist once prescribed a steroid rinse to help me clear up a mouth full of sore spots. Another thing to watch for is irritation or sores at the corners of her mouth. A lot of us develop angular cheilitis which my doctor treats with a prescription of nystatin cream. It is awful to see a child suffer. I hope she feels better soon.”

K6a patient “I had a lot of trouble with the white build up when I was young, a few things helped, eating toast in the morning and scrubbing it with a towel, it’s quite gross to think of now but worked for me, also if I used mouthwash daily that seemed to help too. To help with the pain, use a teething gel like sm33 or bonjela, it’s got numbing agents in it.”

K6a patient “I started using a tongue scraper a couple of years ago, and I loveee it. I was nervous to try it bc I thought the friction might make things worse, but it’s made things better ! There are days, when my tongue looks pretty close to normal. I just do three pretty firm scrapes every morning. I would definitely choose a metal scraper. A friend of mine was getting her certification in Ayurvedic medicine … she told me waste is excreted from the tongue, which is what motivated me to try it … if we have extra tissue, I can see us holding on to more of the waste. Might be worth a try.”

K6a patient “I use a tongue scraper daily. It definitely helps.”

K6a patient “White tongue. Does anyone have a thought of what makes the tongue more or less white? The thickness of the white mucous membrane is varying a lot and we don’t know why.  Does anyone know what we can use to make it thinner? If something she eats affects? Or if you know something medical to use.”

K16 “I just brush harder, but my dentist doesn’t like that. I haven’t heard of any remedy

K6a patient “Drinking a lot of water and avoiding sugar helps me. Brushing my tongue when I brush my teeth also helps. I use baking soda toothpaste.”

K6a patient “I brush my tongue after brushing my teeth, especially in the morning. The reason the leukokeratosis is white is simply because it’s in the mouth and it’s always wet.”

K6a patient “This help alot. Use organic coconut oil as a mouth wash.”

Trouble with nursing/sucking

K6a patient: “Sucking for baby with PC was difficult and seemed painful. I used very soft bottle nipples with big holes. I needed to sometimes squirt the milk in the baby’s mouth at first, so I used bottles with soft plastic that could be squeezed, which worked well. Sometimes, the baby will cry at first then be hungry enough to just “go for it” and then get used to the sucking. Either the pain lessened as sucking went on or just got used to it. The big nipples and squishy bottles helped a lot. The pain of sucking seemed to subside after the first half year.”

K6a patient: “I didn’t feed for a long while and ended up staying in the hospital for a few months at the start of my life. These days you cant keep me away from food.”

K6a patient: “I was actually taken aback to see this listed as a possible manifestation of PC on the home page…”Intense pain lasting 15-25 seconds often when beginning to eat (this may be connected with salivary glands rather than ears and more research is needed on this finding).” When my son (who has PC) was born, he had horrible feeding difficulties. He would scream and cry when he attempted to suck, and it was absolutely chaotic for the first few days/weeks of his life. We tried breastfeeding, multiple styles of nipples, etc. At a few days old, I discovered blood in one of his spit-ups (Imagine the panic!). A general pediatrician had me give him Mylanta (ADULT STRENGTH) suspecting “indigestion.” Needless to say, we never returned to him. I noticed a blister on my son’s tongue and in the rear roof of his mouth. I was so incredibly petrified that he had EB (epidermolysis bullosa). Dad and I were misdiagnosed with EB until I was about 17 years old. As you may or may not know, EB can be very, very severe, where the mucosal tissues blister. We took my son to our dermatologist (AMAZING physician) who assured me that she did NOT believe my son had EB. As an aside, she also told me that he has the most beautiful eyes that no one would ever notice his nails. HAHA! Way to a new mom’s heart, eh? We finally ended up in the care of a pediatric GI specialist who basically, by trial with medication, diagnosed Cooper with reflux. Praise be to God — Zantac and Reglan (bad stuff) seemed to ease his suffering. I think we collectively believed that it was reflux complicated by PC or vice versa. We still had to find new styles of nipples periodically, but he grew to a happy, chunky little monkey in no time.”

K6a patient: “My son had a hard time feeding as a baby. It’s strange, but he also brought up blood when he was a couple of days old. That was the first of many, many hospital visits. My son could not suck as it was too painful. I breast fed for the first few days, but he was constantly crying. I thought he was not getting enough milk, so I changed to a bottle, but this never helped. I would sit for hours squeezing the milk into his mouth. Doctors changed his milk a few times, thinking he was allergic to various things. He was then put on to solids very early. We were also told he had gastric reflux, and my son was given all sorts of meds — he was always sick. Then, at 10 months, he was diagnosed with PC. We stopped all the meds and he seemed to get better very quickly. He doesn’t seem to have problems with his mouth now, except he doesn’t like things which are acidic. My son does get the ‘ear’ pain though, it is usually when starting a drink/meal. It’s quite intense, and he likes us to put pressure on his ears for a few seconds, then it seems to pass.”

See Miscellaneous Questions & Answers for Breastfeeding.

Trouble with Angular Chelitis

K17 patient “Can anyone who gets skin cysts at the corners of your mouth please give us some advice on what we can do to treat/prevent/help remedy? These just started – 14 yr old, K17. Not fun for middle school age girl, she is having hard time. Thanks in advance.”

K6a patient “I had this a few years ago and it managed to clear up by itself the only thing I did it was put Vaseline with aloe Vera on my lips to help the moisture and it’s cleared up now sometimes I’ll get a tiny tiny one appear but I have to leave it and not touch it. The doctor thought I had oral herpes, I tried explaining I have pc and it was that … Herpes was fairly offensive as I have a wife who I’ve been with 10 years 😁. Hope your daughter is okay”

K16 patient “My son gets these from time to time, I’ve always just thought they were cold sores, we put abrevia on them and they clear up. Never thought to connect it to pc.”

K16 patient “Looks like angular cheilitis (aka perleche) and yes, it is related to PC. I am K16 and have had this for as long as I can remember. The dermatologist can prescribe a cream to put on at night that helps clear it up and/or keep it under control. It is also helpful to make her dentist aware of her PC condition; mine uses vasoline or numbing cream when having dental work done because it can become quite painful.”

K16 patient “Great tips. If kept too moist, it can turn into a fungal infection. My doctor gives Nystatin cream for that.”

K6a patient “The moist, spongy tissue is a set-up for bacterial or fungal infection. I remember being prescribed nystatin lozenges as a teen. My 16 yo old is dealing with them right now. Bactraban seems to help. Bactraban is my magic juju cream – I swear it helps everything ! Naughty to say bc it’s an antibiotic, but a little goes a long way. I think my dad actually puts yogurt on his (anti-fungal). Also, my son had a dental appt this week. He’s got these in both corners right now. She recommended a multivitamin – worth a try.”

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 adolescent and adult years.

CARING FOR FOLLICULAR HYPERKERATOSIS

It is recommended for children with follicular hyperkeratosis to wear loose clothing to ease friction.

PATIENT TIPS & COMMENTS FOR FOLLICULAR HYPERKERATOSIS

K6a patient: “In winter, I put lotion or Vaseline on her body. Urea and Lachydrin burn and do not work. Some perfumed body lotions burn also. I usually use suave or generic brands without perfumes. Tight jeans or corduroy irritate the bumps. She usually wears knit pants (cotton).”

??? patient: “I have bumps on the elbows, knees, and buttocks. I put Vaseline on the elbows and wrap a bandage around them for a few days until they are soft and enough to ‘twing right off.’ On the knees, use a good moisturizer as often as possible. On the buttocks, use moisturizer as often as possible — usually before bed — to let it breathe without anything on it besides the moisturizer. There are no more bumps on knees and elbows now, but you should still moisturize them to prevent any bumps from coming back. It helps the buttocks too. It can take a while for progress, but they will go away if you keep working at it.”

K17 patient: “I use creamy petroleum jelly on the arms and legs.”

K6a patient: “My daughter who is 13 still gets these really bad even on the bottom”

K6a patient: “Exfoliate and moisturize works for me but I don’t have much now.”

K16 patient: “CeraVe Skincare this is good x”

K6b patient: “I had my bottom freezed where the sports where. That sorted out the problem. I had it done at my surgery. It is painful when you have it done as it’s freezing the sports.”

K6a patient “My son has lots. I basically don’t have them anymore as an adult, but had lots as a child. Gentle removal of the centers when they become large and irritating. Then endure.. best you can do.”

K6a patient “For my child we use bathing in the sea or adding dead sea salt in the bath. That loosens them which helps when you remove them. After the bath, just pulling them out. The salt water softens them (long bath) and that seems to make it less painful. Sometimes, when they’re big, it can take more than one session though.”

Unknown “Moisturizer daily is the cure but same as many others, mine are almost non existent as an adult but horribly painful as a kid”

K6a patient “Hi, my son is 6 years old and had it too. Usually we soak in a water with sea salt or potatoes flour, they makes water to be more softer for the skin. I am using also urea cream 15%. It is makes moisture and softer too.”

K6a patient “Although mine were much worse when young, I still have some, elbows, knees and bottom. Moisturizer, bath then try and remove them. I am able to remove some with my fingernails, then apply peroxide or alcohol to prevent infection.”

K6a patient “Braided mitten or any dupe for it, and panoxyl. SCRUB scrub SCRUB in the shower after soaking in a warm/hot bath. After you soak, while scrubbing with the mitten and panoxyl your skin should be coming off in like little eraser shavings and after doing that a few times a week and washing with panoxyl in between, you’ll see a huge difference. Also apply Amlactin lotion afterward.”

K6a patient “I would do few days in a row hot bath, gantle scrub (i found very helpful and gentle a glove type of scrub) and in the end putting on the Dove 24h hydration lotion, which i couldn’t believe how helpful it is. After few days of this they are so soft that they fell off on their own or i scratch them down with the nails or i use the tweezers. Then you can just repeat this every few days to maintain it soft and nice 🙂. Hope it helps.”

K6a patient “An Exfoliating body wash helps a ton! We use Dove and then a good moisturizing lotion like Hempz! Use daily 👍”

K16 patient “My 3 year old is a spontaneous K16, so we are learning as we go. He developed this cluster of bumps on his stomach and on one of his upper legs about a month ago. Is this what the PC cysts look like in little kids? If not, have any of you with PC ever developed something similar?”

K6a patient “I reconize the bumps. The called follicular hyperkeratosis, just what janice posted. My son have this al over his body, hope they disappear when he gets older. Sometimes they itch, but I think when the bumps stay little they don’t hurt.”

Adults also have issues with these little bumps.

K6a patient “Does anyone get these in the summer on the thighs (while the skin is sweating and well my thighs are rubbing against each other as I walk. It is quite painful and somehow I can’t get rid of it. Any advice.”

Unknown “I literally just started getting this, this summer (lockdown weight got me all chubby 🙄😂) and i actually ended up with the worst abscess ive ever experienced from it. Hope yours clears away! X”

K16 patient “I had something similar a few years ago and not sure it was related to pc. Doctor prescribed this and it cleared up https://www.nhs.uk/medicines/fusidic-acid/ started spreading over my legs and bum and just didn’t go away. This cleared it up but was prescription only x”

K6a patient “I get them. What I do is take a bath with plenty of epsom salt then pull them out. It hurts and the do bleed. But I fine if I pull the head out they don’t hurt when I walk. And I think it helps them go away faster. At night I put lotion on the area I find it helps with the red and tenderness around them.”

K6b patient “I get this on my legs and back of upper arms. I am assuming it’s wherever the cuffs of my clothes rub. As a kid I used to get it around my ankles where my socks ended. It drives me crazy.”

K6b patient “Get some cycle shorts for thighs rubbing, I always wear a pair under dresses in the summer. Sooooo much more comfortable.”

K16 patient “I second using cycle shorts they’re a game changer! Using talc on the skin or even a stick type deodorant helps quite a bit too, less sweat means less friction 😅”

K6a patient “I used to get something like this but not as intense. I used a glycolic/salicylic cleanser on it a few times a week and it helped. The one I used is called AHA/BHA cleanser from SkinMedica. When you run the product on let it sit for two or three minutes for the glycolic and salicylic to work it’s magic and then rinse.”

K6a patient “I get them on my butt cheeks and I pick them out”

K6a patient “me too! Anywhere my skin folds or rubs against its self.”

K6a patient “I used to get these horribly when I was younger, grew out of it at 30yo, my derm told me they’re called follicular keritinosis or something like that, it’s basically a build up of keratin in the hair follicle. The fix for me was I’m not very hairy so eventually got better, but also constant use of moisturiser completely cleared it up, theory being it softens the keratin in the hair follicle and doesn’t get clogged up, I only get a rare one on my elbows now and very lightly on my thighs, it clears up completely after a few days of moisturiser.”

K16 patient “When I was pregnant I started getting them on my belly. I still get some once in awhile. I picked at then and used sylic acid. It didn’t help at all but it made me feel better about them.”

K6a patient ““silky underwear” is a powder product from LUSH, used on a hot day it stops the friction rub – amazing”

K6a patient “Sometimes I get that on my hips by my beltline”