Jose H. - Venezuela - 2020
José Gregorio Hernández Arévalo
Soy paciente de ictiosis y quiere brevemente compartir algunas de mis experiencias, tengo 48 años, soy venezolano, y para mi la ictiosisis ha sido mi eterna compañera, no niego que en los primeros años de mi vida y de mi adolescencia fue muy complejo y algunos momentos tristes, pues para esos años se sabía muy poco sobre la ictiosis, mas aun aqui en venezuela, no se contaba con internet y los datos que se encontraban en los textos especializados eran muy pocos, nací en un hogar muy humilde y por ende los costos asociados a los medicamentos que enviaban los medicos en algunos momentos no se podían costear, durante los primeros 14 años de mi vida Visité innumerables doctores y me someti a múltiples tratamientos todos con muy pocos resultados y en algunos ninguno, como me imagino le ha sucedido a muchos de los pacientes que sufren esta deficiencia.
Pero a esa edad decidí no visitar mas medicos y solo aplicarme una crema humectante después del baño diario, una vez que acepte mi deficiencia comencé a vivir la vida como alguien normal seguí mis estudios hasta graduarme de ingeniero industrial, posteriormente me case y tengo una bella familia con dos hijas super hermosas, he desarrollado mi profesión en múltiples ámbitos laborales, e incluso he sido docente universitario, bajo algunas consideraciones especiales he practicado toda mi vida el fútbol y considero que mi vida gracias a Dios es totalmente común a cualquier individuo.
Puedo señalar que lamentablemente por la situación en general que afronta mi país, en los últimos años no he podido acceder de forma continua a la crema que use toda mi vida, y me ha tocado disminuir el nivel nivel de hidratación diario para mi pier
Podría extender el relato por varias páginas contado las situaciones, anécdotas y aprendizajes que me ha dado el convivir con la ictiosis, pero aunque cueste creerlos, son muchísimos más los buenos y felices que los malos y tristes.
La enseñanza principal es que si podemos llevar una vida totalmente normal, adaptándonos de alguna forma al entorno y comprendiendo que en un altísimo porcentaje las personas que nos hacen pasar un momento triste es más por desconocimiento de lo que abarca nuestra deficiencia que por maldad de ellos.
Te envio fotos mías donde certifico mi condición y de mi familia para que la conozcan.
A espera de poder seguir en contacto con ustedes, me despido.
ENGLISH TRANSLATION
I am a patient of ichthyosis and want to briefly share some of my experiences. I am 48 years old and I am Venezuelan. For me ichthyosis has been my eternal companion. I do not deny that in the first years of my life and my adolescence there were very complex and some sad moments, because for those years very little was known about ichthyosis. Here in Venezuela, there was no Internet and the data found in specialized texts were very few. I was born in a very humble area and the costs associated with the medicines that the doctors were not affordable. During the first 14 years of my life, I visited countless doctors and underwent multiple treatments all with very few results or no results as I imagine it has happened to many of the patients who suffer from this deficiency.
At age 15, I decided not to visit more doctors and only apply a moisturizing cream after the daily bath. Once I accepted my deficiency, I began to live life as someone normal. I continued my studies until I graduated as an industrial engineer. Later I got married and I have a beautiful family with two super beautiful daughters! I have developed my profession in multiple work areas, and I have even been a university teacher. Under some special considerations I have practiced soccer all my life and I consider that my life, thanks to God, is totally common to any individual.
I can point out that unfortunately due to the general situation my country is facing, in recent years I have not been able to continuously access the cream that I use all my life. I have had to decrease the level of daily hydration.
I could extend the story over several pages, counting the situations, anecdotes and lessons that living with ichthyosis has given me, but although it is hard to believe, there are many more good and happy than bad and sad.
The main thought is that if we can lead a totally normal life, adapting in some way to the environment and understanding that in a very high percentage of people who make us have a sad moment it is more due to ignorance of what our deficiency encompasses than because of their badness.
What's Your Story? We'd Love to Hear It!
This information is provided as a service to patients and parents of patients who have ichthyosis. It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents. Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here. All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.
