Pachyonychia Congenita Project
Fighting for a cure. Connecting & helping patients. Empowering research.
Pachyonychia Congenita Project
Fighting for a cure. Connecting & helping patients. Empowering research.
Blisters In PC, mutations cause the keratin filaments to form incorrectly, creating cell fragility. This results in painful blisters. Painful blisters are found under the calluses in PC patients.
Cracks in the skin on hands or feet are annoying and cause additional pain.
Dr. Sancy Leachman, MD, PhD “Relieving the pressure of the blister (i.e. letting the fluid out) while leaving the roof of the blister intact to help with healing will reduce the pain significantly. You can begin to train children at a fairly early age (4 to 6 years) to do the popping. Remember to always use a clean/sterile needle or clipper. Each child is different and as a parent you will know best whether the child is ready to learn to do this. I think you will find the child trusts their own ability with the needle more than trusting you to make the cut. Sometimes you need to open a little window in the blister in order for the fluid to keep draining – otherwise with just a pin, it closes back up again.
The roof of the blister is not innervated – it doesn’t have any living nerves in it. The nerves are in the skin below — that is what is so tender — so poking a hole in the blister shouldn’t hurt too much. A child won’t believe you without testing it. The other thing that might help is to soak the blister before pricking or cutting it to soften it – the downside of that is that if it doesn’t get drained, it might make it more painful and more swollen. You can always visit a dermatologist or pediatrician who will restrain the child, but frankly, I think that is probably more traumatic and would not be worth the pain relief. The major thing to watch for when a blister is really tender is to assure that there is no element of infection. If a red streak is coming out from it, if fever, chills start, or if the child starts acting irritable, you need to see a doctor quickly because it suggests that the infection has spread into the system and can be quite serious. I hope this is helpful.” (May 2009)
K6a patient “Blisters (appear on every travel, Christmas period which coincides with summer in Chile, etc.)
K16 patient “This is how we treat blisters:
K17 patient “I was getting blisters in this area constantly (heel)…and now thanks to Benzoin Tincture, I have no blisters and not even a sign of one forming. I treat my feet (hot spots), every morning with Benzoin Tincture as a preventive measure.”
K6a patient “I found a “bandage” that is PERFECT for blisters on the heel. It’s called the Nexcare Opticlude Eye Patch.Obviously made for the eye, but absolutely superb for heel blisters. Nice sized padding in the center w/ think, flesh-colored tape all the way around the padding. The eye patch stays on all day even with the friction from the shoe. EXCELLENT product.”
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.”