I do not want people to look at my nails, I want them to look inside my heart.

Desplácese hacia abajo para leer mi historia en español.

Hello, My name is Olivia Castro Lay (PC-K6a) and I am 2 years old. As soon as I was born my mother and my pediatrician Dr. Fabiola observed something different in my nails, they looked stained!

After that my mother could not feed me well and as soon as I try to drink some  milk, I threw up. My doctor referred me to several specialists, one of them, Dr. Daniel Guillen who gave us the keyword “pachyonychia”. After some investigation, my doctor Fabiola and my mum read on this website (pachyonychia.org) that one important symptom was pain at the first suction. This condition did not allow me to gain weight.

Finally, they decided to give me some orofacial therapy sessions when I was ready to sleep and when I was sleeping they stimulated the reflection of suction with massages. Luckily, this pain only lasted few months. Today I can eat without any problem and I love rice, pasta and chocolate.

Leaving my clinical history aside, I want to tell you that I am a very happy girl, that I like to be free, run and jump, walk my puppy and play with my sisters.  I do not want people to look at my nails, I want them to look inside my heart. I am sure that God and the Virgin illuminate the path of all the doctors and scientists who works every day to find the cure. I will continue praying with my family because we are #StrongerthanPC.

Español

Hola, mi nombre es Olivia Castro Lay (PC K6a) y tengo 2 años. Tan pronto como nací, mi madre y mi pediatra, la Dra. Fabiola, observaron algo diferente en mis uñas, ¡parecían manchadas!

Después de eso, mi madre no pudo alimentarme bien y, tan pronto como intentaba tomar un poco de leche, vomitaba. Mi médico me refirió a varios especialistas, uno de ellos, el Dr. Daniel Guillén, quien nos dio la palabra clave “PACHYONYCHIA”. Después de algunas investigaciones, mi doctor Fabiola y mi madre leyeron en este sitio web (pachyonychia.org) que un síntoma importante fue el dolor en la primera succión. Esta condición no me permitió ganar peso.

Finalmente, decidieron darme algunas sesiones de terapia orofacial y para dormirme y ya dormidita me estimulaban el reflejo de la succión con masajes. Por suerte, este dolor solo duró unos meses. Hoy puedo comer sin ningún problema y me encanta el arroz, la pasta y el chocolate.

El engrosamiento de las uñas se trató con urea, pero a partir de este año he tenido infecciones constantes en mis uñas tanto en las manos como en los pies, las que inicialmente se trataron con antibióticos orales e intravenosos que controlaban la infección, pero aparecian de inmediato en otros deditos.

Mi madre leyó en el chat de PC Project sobre la crema de Germolene y ahora controlo las infecciones con esa crema.

En este último mes, mi piel comenzó a cambiar, debe ser la hiperqueratosis folicular. Mi madre ya está aplicando varias cremas con urea y sabila, pero probablemente probará diferentes cremas hasta que pueda observar mejoría en mi piel.

Dejando a un lado mi historial clínico, quiero contarles que soy una niña muy feliz, que me gusta ser libre, correr y saltar, pasear a mi cachorro y jugar con mis hermanas.

No quiero que la gente mire mis uñas, quiero que miren dentro de mi corazón. Estoy segura que Dios y la Virgen iluminan el camino de todos los médicos y científicos que trabajan día tras día para encontrar la cura. Continuaré rezando con mi familia porque somos #StrongerthanPC.

¡Me encanta montar a caballo!

I was born with two teeth and with several nails on my hands and feet with dark color.

My name is Diego Avila, I am 7 years old and I live in Valera, Venezuela with my parents and my 10 year old brother, Fernando. I was diagnosed clinically by a dermatologist with Pachyonychia Congenita at 3 months of age. I was born with two teeth and with several nails on my hands and feet with dark color. At one month of age, my nails began to change color, and at two months old, they started to thicken. My natal teeth came out and the space for permanent teeth that would come in 5 years was preserved with prosthesis.

In my country, they do not perform the genetic tests necessary to confirm the diagnosis of this condition. When I was 2 years old, one day my parents were searching the internet for information and found Pachyonychia Congenita Project. They contacted them and sent my photos and my history, and upon receiving it, the organization decided to give us all their support so that I could do the tests without any cost. My parents sent the requested samples and my condition was confirmed.

Until now, I only have follicular hyperkeratosis in the elbows and some infections in the hand wrists that produce inflammation and a little pain. My mother knows how to cure these infections, and I know when she should treat them and they improve in a few days.

When I start each school year or an extracurricular activity, my parents talk to all instructors or teachers about my condition so they can explain to my classmates and their parents. I have been taught to explain to others the name of my condition and its symptoms, although it bothers me a little when I am asked many times about it. I have been learning that it is especially due to the curiosity surrounding a very rare condition, so I breathe and try to have patience to respond calmly. Sometimes I have been teased by other children because of my condition, but my instructors or my parents always support me and calmly explain to these children what they should know to better understand what happens to me.

I am a very intelligent and very active child. I have very good grades in my school and I practice several sports. Right now I do tennis, swimming, and soccer. I like to go to the pool and to the movies. I love to invite my friends to play at my home with my Legos, my toys and the PS3 with my brother. For my friends, my nails do not make any difference between us, for my family either. In my house, my parents demand and treat me the same as my older brother, with the considerations for my age.

Sometimes I have questions about what happens to me and I ask my parents, who always clarify my doubts. When my parents showed me this page, I appreciated knowing that there were other children with my condition because in my country I have not yet met other people who have it. When they asked me if I wanted to put my story on the PC Project website, I said yes and I asked them to share that I felt like a beloved and respected child despite my condition. Someday I will visit them in one of their annual meetings to hear their stories and share mine.

Diego

Mi nombre es Diego Avila, tengo 7 años y vivo en Venezuela en una ciudad llamada Valera, con mis padres y mi hermano Fernando de 10 años. Fui diagnosticado clínicamente por un dermatólogo con Paquioniquia a los 3 meses de edad, nací con dos dientitos y con varias uñitas de mis manos y pies de color oscuro, al mes de nacido comenzaron a cambiar de color y hacia los dos meses a engrosarse, mis dientes se cayeron y el espacio de los dientes permanentes que vendrían a los 5 años fue preservado con prótesis.

En mi país no realizan los exámenes genéticos necesarios para confirmar el diagnóstico de esta condición. Cuando ya había cumplido los 2 años, un día mis papas buscando en internet información supieron de Paquioniquia Project, los contactaron y les enviaron mis fotos y mi historia médica, al recibirla, la organización decidió darnos todo su apoyo para poder realizarme las pruebas sin ningún costo, mis papas enviaron las muestras solicitadas y mi condición fue confirmada.

Hasta ahora solo presento hiperqueratosis  folicular en los codos y algunas infecciones en las uñitas de las manos que me producen inflamación y un poco de dolor,  mi mamá sabe curar estas infecciones, yo colaboro cuando debe tratármelas y mejoran en pocos días.

Cuando inicio cada año escolar o una actividad extra escolar, mis padres les hablan a todos los instructores o maestros sobre mi condición para que puedan explicar a mis compañeros y sus padres. Me han enseñado a explicar a otros el nombre de mi condición y sus síntomas, aunque me molesta  un poco cuando me preguntan muchas veces por ella, he ido aprendiendo que se debe especialmente a la curiosidad por ser una condición muy rara de la que antes no sabían nada, así que respiro y trato de tener paciencia para responder con calma. En algunas ocasiones he sido molestado por otros niños por mí condición, pero mis instructores o mis papás siempre me apoyan y con calma explican a esos niños lo que deben saber para comprender mejor lo que me ocurre.

Soy un niño muy inteligente y muy activo, tengo muy buenas notas en mi colegio y practico varios deportes, ahora mismo hago tennis, natación y fútbol, me gusta ir a la piscina y al cine, me encanta invitar a mis amigos a jugar a mi casa con mis legos, mis juguetes y el play de mi hermano. Para mis amigos, mis uñitas no hacen ninguna diferencia entre nosotros, para mi familia tampoco, en mi casa, mis papas con las consideraciones por mi edad me exigen y tratan igual que a mi hermano mayor.

A veces tengo preguntas sobre lo que me pasa y se las hago a mis papas, quienes siempre me aclaran mis dudas, así repita las preguntas cada tanto tiempo. Cuando mis papas me mostraron esta página, valoré saber que habían otros niños con mi condición porque en mi país aún no he conocido a otras personas que la tengan, cuando  me preguntaron si quería que pusiéramos mi historia en PC Project, les dije que sí y les pedí que colocaran que me sentía un niño amado y respetado a pesar de mi condición. Algún día iré visitarlos en uno de sus encuentros anuales para conocer sus historias y darles a conocer más de la mía.

Diego

My name is Coraline and I am almost one year old.

I was born a healthy, normal baby. At 3 days old, just before leaving the hospital, I had just a touch of jaundice, but it wasn’t severe enough to need any sort of treatment. My skin and nails turned a bit yellow, but nothing out of the ordinary for a newborn with jaundice, which cleared up over the next few days.

At 5 days old, my nails were a deep yellow, which was attributed to the jaundice, and I also started having problems eating. I was exhibiting symptoms of thrush, also not uncommon in newborns and infants, which appears like white skin or cottage cheese on tongues. (This is a common misdiagnosis for babies born with Pachyonychia Congenita Type PC-K6a – but no one yet knew I had PC). I was prescribed Nystatin, which is used to treat thrush in newborns.  Although uncommon, thrush can be a cause for discomfort and feeding problems.

Over the course of my first few weeks of life, my nails went from normal, newborn nails to deep yellow, then turned deep red, to brown, and then started to curl around 3 weeks old. My first prescription of Nystatin did not cure the thrush, so I started a second dose.

At my 1 month well visit I was still suffering from discomfort, poor eating, and poor weight gain. The doctors still thought I  had thrush, and since the Nystatin had not worked, my concerned doctor prescribed something a little more aggressive called Diflucan. My nails were changing yet again, this time starting to fill out into this odd bubbled, thick nail. They grew thick and tall instead of long. My voice was hoarse and raspy, which my family attributed to my constant crying. Everyone was very concerned about what was going on and why all these various things were happening and not getting better.

By my 2 month well visit, I was considered Failure To Thrive. I had dropped below 3rd percentile on the growth charts. I was 2 months old and weighed only 8 pounds 1 ounce and was 22” long, compared to my birth weight of 6 pounds and 9 ounces. I cried 24/7 from hunger and being tired.  I had a hard time getting good rest because I was hungry, but when I tried to eat, it hurt and it could take over an hour for me to eat just 1 ounce of formula. My parents worked with my pediatrician to find a formula that would work for me, and tried several different bottle types. I just found eating too painful. All 20 of my nails were still thick and abnormal, and after yet another failed attempt at a thrush medication (that makes 4 failed prescriptions total and, of course, all thrush treatments would fail, because I did not have thrush), my family and doctor were very confused and concerned.

At 2 months old, I was admitted to a children’s hospital. I saw several different doctors, was on isolation, the works. No one seemed to know what was wrong with me. I saw Infectious Disease, Immunology, ENT, Gastroenterology, Genetics, Dermatology, and more. The doctors first thought I had Chronic Mucocutaneous Candidiasis, an immune disorder where your body can’t fight yeast. After test results came back negative for yeast (or ANYTHING) on my nails and tongue, the doctors were left yet again scratching their heads and searching for an answer, as clearly we were no longer dealing with what they thought was thrush.

After about 5 days in the children’s hospital, my dermatologist came in with a possible explanation: Pachyonychia Congenita. No one had seen this in person and it is ultra rare, but it would explain all my symptoms. The more my parents researched, the more it seemed to fit. The hospital finally set it as my diagnosis and I was treated with a feeding tube to alleviate my hunger and spare me all the pain drinking from a bottle seemed to cause.

My family found and reached out to PC Project while we were still in the children’s hospital. PC Project connected us to other PC families and gave us answers we were searching desperately for.

I am a spontaneous mutation and after doing the genetic testing, I am confirmed to have PC-K6A. I am now a thriving infant! Although research isn’t complete, PC Project scientists believe there may be a connection to First Bite Syndrome, which is why eating was such a challenge as a newborn. The feeding tube gave me a break and eventually, slowly, I learned to eat on my own again. In January of 2014, I weaned off the feeding tube completely! My nails are now considered normal for me, and my aunt takes expert care of them, using special tools to keep them at a comfortable length and ground down to a comfortable thickness. I was able to put all those nasty thrush medications behind me since I never actually had thrush. What looked like thrush is actually normal for PC-K6A and is called leukokeratosis. Although my tongue always has the “white stuff,” sometimes it isn’t quite as noticeable. ENT confirmed that the leukokeratosis is growing near my vocal cords, causing my hoarse voice. I am still experimenting and learning how best to make sounds, but I cannot do a high pitch squeal like other babies my age.

I have PC, but I am a healthy, happy little girl. Since I am not quite walking or crawling yet, the red bumps and painful feet are not present symptoms, but my family and I will be prepared for that. I have an amazing support system, loving family, and the best big brother to help me through it all!

Thank you for reading my story!

Flynn is such a happy-go-lucky, cheeky, typical little three-year-old boy who knows no difference in his life.

My son Flynn was born at the very healthy weight of 9 pounds 5 ounces. Flynn and I spent three days at the hospital with no real issues until we came home. My daughter asked me what was on his tongue to which I replied, “Milk.” Our midwife who was visiting said, “No that looks like thrush. But more to the point, what is up with his nails?” And so began our journey into the unknown…

The first year of Flynn’s life was hell. I breast-fed him for a week and a half thinking he ate much quicker than my daughter, being 15 minutes on one side. I quickly realized that he in fact wasn’t taking anything. He went from the 95th percentile to the 25th percentile in those first two weeks. We were very quickly admitted to the hospital where he underwent a whole pile of tests to be diagnosed with PC. While we were in the hospital, my brother emailed PC Project for some help. With that came the opportunity to have Flynn tested genetically via them– which we did. When Flynn was around five months old we received confirmation that indeed he had Pachyonychia Congentia – K6a mutation.

The first year of his life was spent syringing milk into Flynn, holding him down to try to get him to suck, and figuring out that a silicon teat wouldn’t work.  Instead we needed to use a latex teat for thickened formula with another hole cut into the teat. In that first year we also gave a whole lot of love, attention, and huge cuddles. There of course was a heap of tears and why him/us?!

Liam and I were starting to come to terms with knowing that PC is with Flynn for life. We got as much information as we could to start preparing ourselves for what was going to happen to his feet and how to care for his nails, etc. I noticed two small bruises on his chest (the size of finger marks) that didn’t quite look like normal bruising. Our local doctor suggested getting blood tests done, which confirmed that he also has severe haemophilia (a blood disorder).

Since the beginning of his life, we have been frequent visitors to Starship Hospital (Children’s hospital in Auckland, New Zealand) with life threatening respiratory breathing issues (still working out what the problem is there). We have almost lost him three times. It seems in winter we have breathing issues and in the summer the blisters on the feet appear.

We have a team of physicians and specialist who are very interested in Flynn. They take very good care of him and are all learning about PC. We couldn’t ask for better care, love and support.

Flynn is such a happy-go-lucky, cheeky, typical little three-year-old boy who knows no difference in his life. He has a sister who always sticks up for him, family and friends who love him dearly. This kid takes everything in his stride. As he grows, my wish for Flynn is to educate people on how painful this nasty disorder is and to laugh off any painful words or effects of PC.

Nothing will get Flynn down.

James has felt a genuine bond of dedication and a feeling of warmth and love within the PC family.

From a young infant, I knew I was different from the other children I was around. As a youngster, you know you’re different, but you don’t ask or say anything to anyone. You just get on with things. I suppose because my mother and gran and other members of my mother’s family were the same, I didn’t think anything of it. At that time in the 1960’s, my mother and others did not know anything about this condition, PC.

What I can tell you is that I always struggled with sore feet and I could see my nails were UGLY to look at and not like others around me. My family on my father’s side were very good footballers – as was I – but I could not last the full game like the guys playing with us. I was in a lot of PAIN, with mainly my feet aching. Like any young lad, I loved playing football. My father had a boy’s football team who played around the city of Glasgow. I remember how upset I would be to find I was not picked to start a match or, if starting, I was substituted part of the way into the game. I was so excited to be named in the team at the start of a game! Although I knew that I would not last the whole game, each time I would go through the same pain, hurt, and emotions when substituted.

As an adult, I continued to live with the pain in my feet. Then I suffered other types of pain caused from abscesses and lumps (cysts) on all areas of my body, adding discomfort and some times greater pain than the sore feet.  I just got on with life as tough as it was. I’ve never had a lot of confidence in my life. I’ve always sat in the background, feeling second best. Today I feel much the same. Going through life with the ups and downs so-to-speak, I questioned, WHY ME? Although other members of my family have this condition, now known to me, I still feel very much alone. I live with this on my own.

I was taken back, with words I can’t find, to know that other people outside my family group sadly suffer like I do. I feel most upset to know other good people worldwide are in pain. In another way, it is like having a family again. When saying that, I mean NOT just the people with PC, but the wonderful professors and doctors all over the world taking the time to look for answers. There is a genuine bond of dedication and a feeling of warmth and love within the PC family. I, James Wark, would like to say for everyone who suffers and the people connected to the PC Project a special thank you.

Catana has learned to let the love for life blur out the pain.

This is the truth—because of the pain, when my husband says “good morning baby,” I often want to cry. Then I see our beautiful sons (our rescue dogs) and his beautiful face and I think beyond the pain. I think beyond the crawling, or my screwed up knees that are as bad as my feet now after 40 years of crawling. Because of the pain, I feel so hopeless, but my parents instilled strength in me growing up that I could do anything.

When I was 8, I learned that I could not run around a grass field to raise money. I found that out myself because they let me try. I made 2 laps. The pain from that story has been overcome as a result of many years and self-confidence that my parents and education gave me. Luckily I was blessed with beautiful friends, many who would help carry me. I think two thoughts every day because of the pain. One is suicide, but the overwhelming one is to stay with those I love and to keep on loving as best as I can. Giving is a great reward!  Rescuing animals, my sons, my parents, my husband, and friends, I would sure not be here without them. The pain is significant, but love for life can blur that out.

There are people with worse diseases. I still have hope for never having to take pain medication and hope that fixing PC will help other painful skin diseases, burns, etc. I hope that PC research progresses. I do not care about the distortion of my finger or toe nails. The blisters and calluses are soooooo painful all day, every day and into the night.

My mom’s friend lost her arm from a rare disease and said, “That is why I am always grateful for what I have. It’s different because your pain is constant.”

Cane and wheelchair help Sean get around.

When I was three days old, the nails on my feet and hands turned yellow. The pediatrician told my mother that it was because of a solution that was used at birth. They would grow out white. The day I was discharged from the hospital at 5 days old I had a large sore on the side of my mouth.

At 6 weeks, I had what the doctor called thrush in my mouth. At 18 months, I was hospitalized for almost two weeks with an infection that wouldn’t clear up. The next four years were a journey of doctors, specialists, and different stories about my disorder. At one point, Rhode Island Hospital recommended that I go to a New York hospital and have a complete blood transfer. This was a dangerous procedure so at this point my mother went to the Mass General with me. I was four years old and I was followed there for years. They would try different creams and topical treatments but nothing ever alleviated the pain from my blisters.

I had a terrible time walking because of the large blisters on my feet. At 6 years old, I was fitted for leg braces. The reasoning they gave me was the pressure of walking would be directly under my knee, so it wouldn’t hurt as much to walk. This lasted maybe a year. My mother found a man that made sneakers for the Boston Celtics and he made sneakers for me after taking impressions of my feet. This was helpful for a while.

I am now age 37 and use a cane or wheelchair when I have a lot of walking to do. I don’t get infections as often as I used to, but still have blisters on my feet and hands. I crawl at home most of the time. My knees and knuckles get sore, but nothing compared to my feet when having to walk. When I crawl, there really isn’t much I can’t do. My arms and shoulders are strong.

I continue to try different creams and ointments. Some will work for a while on my hands but then stop working. No creams have ever really worked on my feet. I am always offered pain medication, but I don’t take anything.

George’s life with PC and pain

I was born with PC in 1959 near Derby. My parents didn’t know at the time that I had PC, and they didn’t know it would be called PC, because it didn’t actually show until I was around 6 months old when the nails on both my hands and feet began to thicken. By age 6 months, I had apparently already won a baby contest, but the PC put a stop to my modeling career or the chance to be a film star.

My parents told me that as a baby I cried a lot, and my first real memories as a child are of having excruciating pains in my feet that made me scream and kept me and my dad awake all night. It was usually the pressures of blisters under the skin.

At about age 8, I was referred to Great Ormond St Hospital in London. Strangely enough, I have always remembered the doctor’s name, Dr Felix S Besser. To be honest, in the mid 60’s it was a complete waste of time. It was given a name which I never remembered (PC) when anyone asked “what’s wrong with you.” I used to go with my Grandma, so I enjoyed time with her and the train and taxi rides and being treated in London.

We soon stopped going because all I got was some sort of salty Vaseline to soften the hard skin on my feet, photographed a lot by strange doctors from all over the world, and, to be honest, we couldn’t really afford the train fares.

I never saw another doctor until I was around 21 years of age. I’d learned coping mechanisms, learned to act that nothing was wrong, lie about things that others couldn’t see, be great at making up excuses with my friends and to be proud of my thick nails. Whilst I would never show it, the only thing that got me was the pain. It was inescapable and it was 24 hours a day.

At about 21-ish, I was at university studying photography when I had a sudden collapse of really intense pain that I could no longer bare. I decided to go back home and go to the hospital and see if they had invented anything. They hadn’t, but I went through all the usual embarrassing prodding and sitting naked in front of visiting doctors who had come to look at the unusual specimen.

I retaliated once when asked to be a prize exhibit at a convention. I agreed only if I could photograph the doctors looking at me. They agreed because apparently I was very rare and they couldn’t get another like me. ‘The city doctors try to see if there’s a future left in me’; Thanks Ian Hunter.

The hospital eventually gave me Tigason. Hell, I hated that stuff. It made me feel really ill and it took some of the hard skin away. I am one of those whose feet are completely covered by thick hard skin, so it looked a bit better, but I looked and felt worse with virtually all my hair having fallen out of my whole body and my feet still in real pain.

I gave it about a year, felt abysmal all the time and still the pain never gave way. “What was the point?” I thought. I just never turned up for my next appointment.

I never gave hospitals or doctors another thought for many years until I was around thirty. I was sitting in my local pub, the Rose and Crown, with my girlfriend having a pint, when an old mate of mine, Dougie, came in with a small group. It turned out that he was with his sister and her new boyfriend. The boyfriend just happened to be head skin specialist at a hospital around 40 miles away (Leicester). I agreed to go and see him thanks to another mate of mine Wol who drove me down there. If it hadn’t been for him, I wouldn’t have been able to go because I couldn’t walk anywhere.

I was given some other tablets (no idea what they were called); they did help a little and did reduce the pain slightly. I used them for a few years; apparently it wasn’t good to take them for very long.

Anyway, I gave these up about 20 years ago and I haven’t been near a doctor or hospital since. I never cared what the nails looked like, I could brazen out anything with sarcasm, and to be honest, I didn’t know any different, I had only ever had thick nails. I always thought that the little, pale, flat ones that most people had looked weird. The smell from the blisters irritated me because I couldn’t just take my shoes off to rest my feet anywhere. The one thing that has always depressed me was, and is, the PAIN.

In the period between then and now, a mate, Alan, taught me to drive. What a blessing that was. It gave me some freedom. I got a whole load of qualifications, married Steph who I’d known since I was 18, and got a decent job in Nottingham, thanks to being taught to drive.

I have now moved to a decent job in a city 100 miles from Derby, trying to improve access for disabled people in the city. One day, I tried to remember the name that had been given to my strange hands, feet and nails.  I typed it into a search engine, getting it completely wrong but was asked “do you mean pachyonychia congenita?” I said yes and found the PC Project website. At this point, whilst I knew I wasn’t unique, I had never heard of anyone who had my impairment, nevermind met anyone. I had no idea how others coped, or if indeed they did. I read Jan’s corner and was shocked that it was me. A different background, sex, religion, and country, but me nonetheless. She parked as close as she could and cycled to get even closer. She used a wheelchair in the same way I did and hated hot weather the same as I do. Fortunately, I lived in England, and we generally only get about 10 days hot weather a year and they are usually spread out between rain storms. I joined the PC Project site and had it confirmed, by DNA, that I had a specific type of PC. I even spoke on the phone to a doctor from a university in the US.

It’s still the pain that gets me. I have what I call ‘standard days’ when the pain is just a constant bad pain, I have ‘bad days’ when I could cry because the pain is so bad, and the ‘hell days’ when I do scream and shout, when I cannot stand up, sit down, sleep or anything because the stabbing, shooting pains are incredible. I take paracetamol, ibuprofen, cuprofen, and beer. They all used to help a bit with pain relief, but I think the body gets used to them because now even taking them by what seems like the bucket full doesn’t seem to do too much to help. The pain is just getting worse.

In Britain now, as a disabled person, I feel under threat from a government that is just plain offensive to disabled people. Like the old days, we are now looked on with suspicion – as if we are all liars, scroungers, or both. We are the subject of hate crime. We have an Equality Act that is neither use nor ornament to most disabled people because we cannot afford to challenge discrimination. The Equality Act has been stopped because the government don’t want the Act anyway and they even seem to be targeting my job for redundancy.

I thank those who are looking and Mary Schwartz and the PC Project website for promoting the impairment. Please, someone find something safe to take that removes the pain. Don’t bother with the appearance of PC – if that improves as a side issue, well it’s a bonus, but really I don’t care – just take the pain away and let me have one pain free day at least before I die.