PC Kids Corner

PC varies in how and when it starts impacting the lives for children. It can depend on age, mutation, and the child.

How will PC affect me as I grow? Does PC get worse with age? When do all the symptoms and pain kick in? These questions are hard to answer as it is different for each individual. One family found that although their young son with PC-K16 had blisters when he was younger, his PC didn’t really impact his life until he was older probably 6 or 7 years old.  And now that he’s 11, his PC is really impacting him. This experience will be different for everyone with PC.

Will PC limit my future?

Pachyonychia Congenita may impact on how you participate in recreational activities and which jobs you want in the future, but PC doesn’t have to hold anyone back. Say you want to go to an amusement park but cannot handle standing on your painful feet. Some amusement parks have special accommodations for people who struggle with walking. Others with PC may decide to use a wheelchair throughout the park. You will get really good at figuring out how much you can do on your feet and when you will need to stop.

When deciding what you want to do for your career, you can find out more about different jobs, even visit with someone in that field. Sometimes you can make arrangements to make a situation work with your PC. Our best tip is to work hard in school and be a responsible person. When you are older, look for and even train and prepare for jobs and careers that will allow you to mostly sit down while you work.

What to do during School Trips?

It helps if you have already discussed PC with the school and teachers before the year began. Find out the details about the trip and make arrangements so you can participate without making your symptoms worse.

What about college/university?

You can go to any college or university. Again, one of the best ways is to be open about your pachyonychia congenita with the college by going in to speak with the counselors and teachers directly. As the buildings are far apart, biking is a great way to get from class to class. Some universities will require additional supporting information for certain accommodations. This is where your genetic testing report or a letter from PC Project can assist. At PC Project, we have prepared letters to get special accommodations that helped them be successful in school or work with PC.

Siblings and family life

(e.g. tips for maintaining balance)

WYNTK:  tips here?

PC Project is a small, mainly volunteer-run charity.  We rely mainly on the support of our volunteers and of individual donations as we fight for a cure for PC. 

You can find out more on the About PC Project page. There are many simple ways you can help us support us.

Join the International PC Research Registry

Joining the International PC Research Registry or patient registry is the most important action a PC patient can take or a parent can take on behalf of their child with PC. The registry collects data from the people who have been genetically confirmed to have PC. This provides an evidence base about the condition which then guides research and developments for treatments. Also, the larger the registry, the more likely researchers and drug development companies will be interested in finding a treatment for PC.  Each and every single patient in the registry is very important, so please join and encourage everyone with PC in your family to do the same. 

Participate in research

We are so lucky that we have doctors and scientists who want to help us better understand PC, why it hurts so much, and how we can stop the pain! To do this, those with PC can occasionally be asked to participate in research studies or to fill out questionnaires asking about their PC.  These studies and surveys are really important as they bring together everyone’s experiences and can provide more evidence about PC, how PC feels, and what treatments work.  PC Project will occasionally send out requests to help with research and if you receive one, please help us out by participating.

Awareness and fundraising

Two major things you and your family can do to help PC Project are to raise awareness and raise funds!  These two activities are closely linked and they both help build a strong community and show people who make the decisions on whether to fund research into PC that people around the world care about the condition and want a cure! Please know that all your efforts and individual fundraising efforts make a real impact when applying for research grants and seeking corporate sponsorship funding.

Keep an eye out for the month of June. This is when we have PC Awareness activities around the world!  But of course, you don’t need to wait until June to get involved!

Awareness Raising

By now you will know how rare PC is! In fact, it is so rare that you and your family members (if they also have PC) may be the only ones in your town or city who have PC. For example, there are only 40 known people confirmed to have PC in Australia!  With over 25 million people living in Australia, that’s a really, really small number of people who have PC! Of course, we think there are more there and we just don’t know about them yet!

This small PC population means that you are the one to represent PC in your area – you are the ‘heart’ of PC where you live! Simple ways in which people have raised awareness of PC are handing out leaflets, sharing PC posts on social media, or just talking about PC to their family and friends.  PC Newsletters are also a great way to share information about PC. You can forward these to your family and friends. Don’t worry if you are shy–start small and work up to what you are comfortable sharing.  What matters is that you are part of a larger PC community effort and that together we can succeed in raising awareness of PC.

Fundraising

The best advice we can give you when thinking of fundraising activities is to choose something you already know and like! Any action that will be fun for you and for your family and friends is perfect!  For example, if you like cycling, then a sponsored bike ride may be a great way to raise money.  Or if you like cake (and who doesn’t?!) a bake sale is a great idea.  Your action may be LARGE or very small and may raise only $1 (or $100,000!). All actions are great and all help PC Project’s mission to stop the pain of PC!

PC Project can help advertise the events through our website and other social media outlets. We can provide PC flyers and help you contact your local news outlets as well. Below are a few ideas and events that children have successfully completed. 

Awareness and Fundraising examples

There are many things that children can do to raise awareness and funds for PC Project. Below are just a few stories and ideas.

• Lego Walk for PC!
  • Everyone knows how much walking with PC can hurt, so why not give your friends an idea of what it feels like?  A PC family in the United Kingdom organized a sponsored Lego Walk! Children raised money and then had to walk two meters on Lego bricks which hurt! The family also put on a BBQ and made a social evening of it. They were amazed at how much their local community came out to support them.  The Lego walk was combined with a Firewalk and raised over £5,700.  If you would like to organize a similar event, the family is happy to share their tips! Please contact PC Project if you want to talk with that family.
• Spinning marathon
  • Another family organized a one-day spinning marathon. Over 200 people participated, learned about PC, and raised biked to raise funds for PC research.
• Bake sale at a mountain bike race
• Bowl-For_A-Cure
• Ice Cream Social
• A “ThickSkin” Duathalon, with kid races
• Car Washes
• Archery Training
• Balloon release and craft sale
• Chess tournament and book fair
• Collection boxes in restaurants and stores
• Family BBQ with face pointing, tie dye, games
• Raffles and news articles
• Wrote in a blog about PC
• Family Chiropodist bake sell and flower sale (poppies)
• Shared something on social media about PC
• Baking and bingo for charity

And there are so many other ideas for raising awareness and funding for PC research! If you have a good idea, please share it with us at info@pachyonychia.org.

If you are a parent or caregiver of a child with PC, you are doing great and we are here to help!

Because Pachyonychia Congenita is a rare disease, those who have it can feel isolated and so can their family members. Sometimes it takes going to several doctors to find a clinical diagnosis and sometimes an answer isn’t found until the family finds PC Project online and gets a diagnosis through genetic testing.

Most people with PC or their families have never met or spoken to another affected individual outside of family members.  When a parent has a child with a spontaneous mutation (the first case in a family), both the child and the parent can feel even more alone. 

Once a child has a diagnosis of PC, a parent may wonder what this will mean for their child and even feel nervous about their child’s future. A parent may not know how to best care or manage their child’s PC, especially when what works for one person doesn’t necessarily work for another.

Children are often teased and just want to be normal. Because of that, PC patients often downplay the extent of pain and the restrictions that PC puts on their lives. Many people with PC ‘just get on with it’ but they certainly pay the price for it later.

Still, by helping PC children learn that others in the world have the same problems and challenges and how to cope with them, we can help bring comfort and hope to PC Kids.

PC Project

PC Project can help in many ways from providing leaflets and brochures for you to give out to Medical Professionals or to schools, to answering any questions you have about PC, to putting you in touch with other families who are in similar situations.  For example, if we don’t know the answer to any questions right away, we can email questions to other PC families and caregivers who more than likely will be able to provide advice. PC project can also help you apply for services you may need such as helping with letters for disability parking permits, or benefits. PC Project can also write letters to schools to help educate teachers or administrators, or to request special adaptations (such as not wearing nylon socks or allowing the child to decide when to participate in PE and when to sit down).  You are part of a welcoming PC family, so please connect with us if you have any questions or need support.

PC Project has also put together a helpful list of possible actions which friends and family may take to help. 

Tips and Tools

Tips and Tools, also known as our PC Wiki, is a page full of information which has been carefully gathered from many sources including patient web meetings, patient emails, Facebook postings, patient support meeting discussions, and physician notes.  Our goal is to provide a central place where PC patients can find tips and information from other patients and where patients can share what works best for them and what they have experienced. 

Facebook Group

The Pachyonychia Congenita Facebook group is a closed private chat group.  Only those who are part of the International PC Research Registry (completed questionnaire, consent form and sent photos) can join, so if you or your child haven’t done this please do so! Joining the registry is the most important thing a patient can do to access the right care for their child with PC.

Parents who don’t have PC can join the Facebook Chat group on behalf of their children in the registry. The Facebook chat group is a valuable and supportive group where members can ask each other for advice on anything from living with PC to managing PC.  It’s also a great place to share fundraising ideas and positive PC stories.  All posts are confidential and can only be seen by members of the group. This means you can post questions and photos or pictures that you may not feel comfortable sharing with people who don’t have PC.  

Please do not use the Facebook group as a place for medical information, but to share and support one another. You can send any medical inquires to info@pachyonychia.org or discuss with your local doctor.

Web meetings

We have held web meetings for PC Kids, teens or by specific genes. If you are interested in a webmeeting, contact PC Project and we will arrange a meeting and invite others to join. This gives you an opportunity to meet others from the comfort of your home. You can talk, chat and share your video screen on a computer or phone in order to interact with others who have PC. We can do meetings for specific topics or just for the fun of it.

Patient Support Meetings

Our Patient Support Meetings are a great opportunity to meet other kids with PC or other parents of children with PC. patients, caregivers and children.  Meetings are held every year, alternating between the United States and Europe.  For details of our past meetings, or visit the video and presentation library. For many this will be the first time they have met another child or family with PC- often an event which is life changing. Here are some comments from PC patients who have attended PSMs in the past:

“At the Patient Support Meeting, for the first time I looked into the eyes of another person with the same disease, saw them move like me, saw them use the same tricks that I use to get through their day. This gave me an immense feeling of no longer being alone and it’s a wonderful feeling. I would say that I’ve never been as happy and confident before the PC Patient Support Meeting experience.”

“Everyone is so friendly and welcoming and it’s a once in a lifetime opportunity to meet people with the same struggles and to learn more about the condition.”

“Meeting other people like me was so awesome. Felt like they were long lost family. It was so interesting finding out about the research that is being done.”

“This was one of the best experiences of my life to finally meet someone with the disease I have. It wouldn’t be the same over web.”

“PC is a family first and foremost. The PC organization has done so much for me and my family and changed my life in a way that I cannot put into words. I am so very grateful and definitely wouldn’t be the person I am today haven’t I met you all.”

“You will also learn a lot about how to care for PC and finding others that you can talk to that probably can understand more about how you feel about PC.”

“The meeting was very friendly and welcoming. There was no pressure to be more involved that I felt comfortable with, it was uplifting to meet people with similar experiences to mine.”

“It’s amazing to be able to talk to other patients with PC and instantly makes you feel understood and much less isolated.”

“That it will help you to understand the disease but also to share common experiences and feelings with people who can understand you too.”

“It is a worthwhile experience and really fulfils its name – Support.”

What you need to know:  Scholarships are available to help financially support families attending Patient Support Meetings. Our goal is that scholarship funds will pay meeting fees for every patient to attend their first PC meeting. In addition, PC Project Scholarships provide funds for patients and family members who need assistance for travel, hotel, and/or meeting costs.

I think this is the section that really needs to be broken down by age: 0-5, 5-11, 12+

This section may also need to be broken down by different mutation. For example, we found that although Timmy (K16) had blisters when he was younger, his PC didn’t really impact his life until he was older probably 6 or 7 (can’t quite remember).  And now that he’s 11, it’s really impacting him.

• How will PC affect my child as he/she grows up? e.g. will it get worse with age, when does it kick in?
• Will PC limit my child’s future? E.g. it may impact on the job they can have but PC doesn’t have to hold anyone back
• School trips
• Uni?
• Siblings and family life (e.g. tips for maintaining balance)

WYNTK:  tips here?

PC Kids Corner:

1. What is PC?
2. Explaining your PC
3. Bullying
4. Managing your PC at home
5. Managing your PC with a professional
6. Living with PC
7. For Parents and caregivers of children with PC
8. Supporting PC Project and the PC Community
9. PC kids and teens- The brilliant things kids with PC are achieving!

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. Some of the people who may help you are general practitioners, dermatologists, chiropodists, podiatrists and general practioners.

General Practitioners

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.

Dermatologists

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.

Chiropodists, podiatrists

What one family with PC in the UK does: visit an NHS chiropodist regularly (approx. every 3-4 weeks)

I’ve included some tips which work well for us in the UK, where we have a National HealthCare Service (e.g. we do not pay privately for these appointments).

Top tips:

• Try to establish a relationship with your chiropodist- with our son’s PC we have found that there’s a fine balance between removing enough skin without going too low. If it’s too low it hurts!!
• Try to plan your appointments around other activities. Even when we get the balance right with how much skin is removed, his feet will still often be sore after an appointment so we try to make sure we have nothing planned after school that day so he doesn’t need to be on his feet.
• Book appointments well in advance. There is often such a demand for these services that I try to book months in advance so that we are seen regularly.
• Work with the school to manage the lateness/absences due to the appointments. These are a medical necessity and the child should not be penalised for missing school for regular care.
• Use the opportunity to help spread the word about PC- chiropodists see a lot of feet! We have brought in leaflets before for them to give to other patients who they think may have PC.

Differences between medical degrees

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 PhD 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 PhD 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 PhD, though the PhD 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.

You and your parents can learn the best ways to take care of your PC

PC varies so much, between the different keratin genes involved (keratins K6a, K6b, K6c, K16 or K17) and the specific mutation. Even people who have the same mutation may look and feel differently. Having only one way of managing PC for everybody is almost impossible! As it is often difficult to understand what is ‘normal’ for PC, people use different methods for how best to treat their skin and nails.  

Remember that even though a treatment might work well for one person, another might find an entirely different treatment that works best for them! This might be true, even though both people have the same symptoms – PC is a funny condition like that. It really is about finding your own preferred way of treating your PC, and that might well change over time.

That said, there are lots of things that you can try at home to help reduce how much PC hurts.  These home treatments range from creams for cracks to regularly soaking feet to shaving off thick skin with a blade.  This section covers some of the tips that those with PC have shared with PC Project about how they have learned to manage their PC at home.

Find ways to keep the feet comfortable

Many with PC find that when their feet get hot or sweaty, the pain intensifies and therefore, find it helps to wear open shoes as much as possible.  Again, different things work for different people. Some keep ice packs in the freezer to cool their feet down, whereas others like to soak them after a hard day.  Walking on a hard floor can also hurt those with PC, so wearing slippers or flip-flops inside may be a good idea.  Some people even wear waterproof flip-flops in the shower.  A smooth shower base also helps! Some can’t stand with bare feet at all so they use shower stools or sit down in a bathtub.

Many people with PC have also shared how they like to sleep with their feet outside of the covers.  This is because the covers feel like they are pressing against the PC skin which can hurt. This also helps to keep the feet cool.

“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

How much thick skin to trim off and who does it for you varies from person to person. There is no right or wrong way and you need to find what is best for you/your child.

Some find it best to remove their thick skin themselves at home as they know how low to pare down the skin and they don’t trust anyone else to do this! Others with PC, especially for younger children, prefer to use a professional, for example, a chiropodist or podiatrist, for shaving thick skin from feet.  As you get older, it may be possible to carry out more and more self-care, such as trimming your own thick skin (many people with PC!) Talk to your parents or a healthcare professional about this.  There are many good hygienic blades you can buy to help with self-care. Never attempt to trim your feet without the help and supervision of a parent or trusted adult.

Trimming Nails

Caring for nails is a lot like caring for thick skin. Everyone has a different way of trimming their PC nails. Some like an Emory board to file the nails, others use big clippers and some even use a power tool to sand down larger nails, like big toe nails.  All trimming tools for both nails and thick skin should only be used with the supervision and help of a parent or trusted adult. You will find the best tools to match your particular PC nails and feet.

Preventing Infections

PC does not cause infections. However, it is possible to get a secondary fungal infection. An infection is caused by germs from the outside, not from something internally. Children with fragile nails are more susceptible to infections because they don’t have the same barriers as others, but the infection is not caused by PC. Infections are more common in children as they are more exposed to germs. Soaking hands and feet in bleach bath (1 capful of unscented bleach into 1 gallon of water) can help prevent infections. This kills yeast, which causes fungus and viruses. Use a fresh batch each time. Rinse after using.

Treating Swollen Nails – 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. The following is a summary for treating nail infections. 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):

• 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 usually form around friction sites on the skin (the waist, hips, knees, and elbows.) These symptoms are more common in children and the good news is they usually lessen during the teenage and adult years. Other parents with PC children with follicular hyperkeratosis have told us that wearing loose clothing to ease friction is helpful. Some patients use creams or lotions to help soften the skin and the bumps. Then, sometimes the bumps will get so soft they can be plucked right out without hurting.

Care for Cysts

Not all PC patients suffer from cysts. Cysts normally don’t cause problems until after puberty. Cysts usually do not cause pain unless they rupture or become infected or inflamed, which happens a lot in PC Cysts. Most cysts do not disappear on their own without treatment. A warm compress may help some cysts while other cysts may need to be drained to relieve symptoms — that involves piercing the cyst with a scalpel and draining it. That doesn’t cure the cyst, however. Some inflamed cysts can be treated with an injection of cortisone medication to cause it to shrink. Cysts that do not respond to other treatments or reoccur can be removed surgically if they cause troublesome symptoms.

Leukokeratosis

The white film on the tongue and inside the cheeks 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. For babies this is often misdiagnosed as thrush, but thrush medications do not help. It is also NOT leukoplakia, which is a pre-cancerous condition.

Problems Feeding

Some K6a babies sucking is difficult and seems painful. Parents have found using very soft bottle nipples with big holes. Sometimes squirt the milk in the baby’s mouth and the baby will cry but 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 pain with sucking seems to subside after the first half year.

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:

• Calluses
  • Blisters
  • Cracks
• Cysts
• Follicular Hyperkeratosis (FHK)
• Mouth, Tongue, & Larynx
• Nails
• Pain
• Tools, Aids and Footwear