My Story:

Olivia Castro Lay

English scroll down for Spanish

Hello, My name is Olivia Castro Lay (PC-K6a) and I am 2 years old. I was born in August 11th, 2016. 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.

The thickening of the nails was treated with urea, but from this year I have had constant infections in my nails on both hands and feet, which were initially treated with oral and intravenous antibiotics that controlled the infection but appeared immediately in other fingers. My mum read in the PC Project chat about Germolene cream and now I control infections with that cream.

In this last month, my skin began to change, it must be follicular hyperkeratosis. My mum is already applying several creams, but she will probably try different creams until she can observe my skin better.

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.

I love riding horses!

 

Español

Hola, mi nombre es Olivia Castro Lay (PC K6a) y tengo 2 años. Nací el 11 de agosto de 2016. 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.

 

 

PCers have a great attitude

It is "do all you can, as long as you can despite the pain!" We definitely cheer that approach. However, stories from young PCers (those age 12 and under) who have mild plantar pain and few cysts or other PC symptoms may seem to show you can just be 'tougher than PC.'  That approach is not the most effective, since when full grown, PC pain will increase to the point that being tough isn't enough. It's important that youth develop and find 'off the feet' activities and skills. Most PCers are very, very high achievers and find a way to excel although PC pain has a definite impact on quality of life. That's a whole story in itself!

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