Thursday, November 30, 2017
What is JRA | Que es Artritis Reumatoide Juvenil
It's been a little while since I posted something on here due to technical difficulties, but I promise I will post more often! This post will be explaining what type of arthritis I suffer from. Juvenile arthritis (JA) is an umbrella term that is used to describe the many autoimmune and inflammatory conditions in a child. These are pediatric rheumatic diseases that develop in children under the age of 16. Shockingly, JA affects about 300,000 children here in the United States. Under this umbrella term, I personally fall under Juvenile Rheumatoid Arthritis (JRA). When I was first diagnosed back in 2005, at the age of 11, JRA would fall under just that term. Today, JRA falls under the term Juvenile Idiopathic Arthritis (JIA). JRA/JIA is considered the most common form of arthritis. Even though someone can be diagnosed with JRA/JIA, there are six subtypes that a child can fall under. These six subtypes are: Oligoarthritis, Polyarthritis, Systemic, enthesitis-realted, juvenile psoriatic arthritis, or undifferentiated. Under my JRA I fall under Polyarticular RF positive. This means that it affects me in many joints. It involves 5 or more joints, including legs, arms, neck, and even the jaw. I have it in my fingers, wrists, elbows, knees, ankles, toes, back, and shoulders. Practically EVERYWHERE. Many ask me what causes JRA or how they can avoid it. Answer is that there is no known cause at the moment. There has not been any evidence on what could possibly cause this, especially in children. Some research points towards a genetic predisposition to JA, which means the combination of genes a child receives from his or her parents may cause the onset of JA when triggered by other factors. But overall, there is no concrete answer to the major cause. It is hard living with an illness that is very tough, but I try to do as much as I can in order to have more of a "normal" life. It is hard, but the best thing you can do is see the positive about dealing with an illness. It is a disability, but that does not mean you can't live the life you want to.
If you have any questions, please feel free to message me on here if not email me at firstname.lastname@example.org
*Stronger than Arthritis*
No he escrito muy seguido, pero desde hoy voy a estar escribiendo mas sobre mi vida. Esta publicación va explicar el tipo de artritis que tengo. Artritis Juvenil (JA) es un termino que usan todos para explicar las enfermedades autoinmune e inflamatorias que les dan a los niños. Estas enfermedades se les dicen juvenil a los niños que son diagnosticados antes de los 16 años. Aquí en los Estados Unidos, Artritis Juvenil afecta 300,000 niños. Yo estoy diagnosticad con Artritis Reumatoide Juvenil (JRA). Desde el 2005 a la edad de 11 años, JRA solo se conocía con ese titulo. Hoy en día, JRA es muy conocida por Artritis Idiopática Juvenil (JIA). JRA/JIA son considerado los tipos de artritis juvenil mas comúnes. Entre el diagnostico, un niño puede caer en uno de los seis subtipos que son: Oligoartritis, Poliartritis, Sistémica, Enthesitis-related, Artritis Psoriático Juvenil, o indiferenciado. En mi diagnostico, yo caigo en Poliarthritis o Poliarticulo Positivo. Esto significa que el artritis me afecta en varias articulaciones. Cuando a uno lo diagnostican con Poliatriculo positivo el artritis esta afectando mas de 5 articulaciones. A mi, el artritis me afecta las manos, dedos, muñecas, rodillas, tobillos, pies, codo, la espalda y hombros. Prácticamente EN TODOS LADOS. Mucha gente me pregunta que son las causas de JRA/JIA o que pueden hacer para evitar que les de artritis. Mi respuesta es que no hay una causa conocida en estos momentos. No se sabe porque a la gente les da cualquier tipo de artritis, pero están haciendo muchos estudios para poder encontrar una cura y saber cual es la causa. Hay unos estudios que están mirando si tiene que ver con una predisposición genetica, eso significa si hay una combinación de genes que recibe un niño de sus padres, que puede hacer que aparezca la enfermedad. Puede ser que unos factores especificos ayuden a que coja ventaja la enfermedad. Pero desafortunadamente, no hay una causa especifica ni una cura. Es duro vivir con una enfermedad tan fuerte pero trato de hacer todo lo que pueda para tener una vida lo mas normal posible. Es difícil pero uno tiene que ver lo positivo de una enfermedad. Es una discapacidad pero eso no significa que uno no puede vivir la vida que uno quiere.
Si tienen cualquier pregunta o quieren saber mas, por favor me pueden escribir en mis comentarios o sino, me pueden mandar un correo electrónico a email@example.com
*Mas Fuerte que el Artritis*
Wednesday, November 15, 2017
Future Posts/Sobre mis Publicaciones
From now on I will be posting all my posts both in English and in Spanish. This is very important to me because I am bilingual and when I was first diagnosed, my parents had no one to turn to in order to understand what I was going through. They don’t speak English so they had no way in communicating with other people that spoke their language. I want to be able to help as many people as possible in the languages I know. This is another reason why I feel so passionate about spreading awareness and talking about my own struggles and how my life has been with my JRA (Juvenile Rheumatoid Arthritis). Plus, I want to have many different readers that I may be able to help or just educate on something that affects 53 million adults and 300,000 children in America.
- If anyone has any questions, feel free to comment or email me at Fightingwithpaula@gmail.com
- Paula Valencia
Desde hoy voy a empezar a publicar todo en Ingles y en Español. Yo pienso que es muy importante publicar en mi dos idiomas porque puedo enseñarles y explicarle a mucha gente. Esto es muy importante porque mis padres tuvieron mucha dificultad entender que era mi enfermedad. Ellos no tuvieron a nadie para conversar o poder entender como padres que era tener un hijo con Artirits Reumatoide Juvenil. Por eso quiero ayudar a muchos poder entender que es esta enfermedad y explicar como me afecta todo los días. Quiero que mucha gente entienda que artritis reumatoide Juvenile no es algo muy extraño o que no existe. Aquí en los Estados Unidos hay un total de 53 millones de adultos y 300,000 niños sufriendo de un tipo de artritis (hay un total de 100 tipos de artritis, unos más severos que otros). Solo porque la gente no sabe de esto no significa que no existe. Yo soy un ejemplo de esos 300,000 niños que sufren de JRA.
- Si alguien tiene cualquier pregunta, me pueden dejar un comentario o me puden escribir a mi correo electrónico FightingwithPaula@gmail.com
- Paula Valencia
Saturday, November 11, 2017
Who I Am and My Diagnosis Story
My name is Paula Valencia and I'm 23 years old. Welcome to my first blog. I decided to start a blog because on my social media I speak up a lot about my daily struggles and fights. I may look like a "normal" person, but I have an INVISIBLE DISABILITY. I was diagnosed with Juvenile Rheumatoid Arthritis at the age of 11. I was diagnosed in what's now called the Cohen Children's Medical Center in Long Island Jewish hospital in New Hyde Park. I was just starting middle school so it was definitely a hard time starting a new bigger school and dealing with an illness I had no idea what it was. Growing up, I was a very active kid. I played multiple sports from basketball, karate, swimming, and dance. I was constantly running around and was always super active. I started feeling symptoms when my right ankle started bothering me while playing sports. My mother took me to the doctor and I took X-rays and the pediatrician said I must have sprained my ankle to take it easy with the sports for a little. Once I was cleared to play sports again I was playing all the sports like as if nothing had happened. From then on I started randomly feeling pain on my ankle, but since I knew it was because I had sprained it I ignored it. After a few months my little brother was only 7 at the time hit my hand my accident and my knuckles swelled up really bad. I remember feeling the pain when he hit it and it was unbearable. I ran to my mother and showed her and she worried right away. We went to the pediatrician and she asked me how I hurt my hand and I told her. Once I was done she asked me how my ankle was doing and I told her that it would still hurt. She right away said I needed to get blood work done and told my mom and I she was referring us to the hospital in order to get more test done because it just seemed off that my little brother could've caused such a bad injury when he is 4 years younger than me. The day came and we went to the hospital. They looked over the blood work my pediatrician had done at her office and then they examined me. They examined my entire body from head to toe and ran more blood tests. I had no idea what was going on. Once she finished, she told my mother that I had Juvenile Rheumatoid Arthritis and that it had to be treated immediately. My mom was super anxious and worried and started asking questions regarding what JRA was. The doctor was explaining to my mom who was in tears what it was and I remember my mom asking if I was going to die. Not knowing what was going on I started to worry and started crying because I just didn't understand and the pain was really bad after everything that doctor did to examine me. The doctor had finally calmed my mom down and all my mom did was hold me while the doctor explained to me what I had. At that age all I understood was that I had an illness that caused a lot of pain if it wasn't treated. They explained to me that I would be put on medication and that I am very lucky to have gone to them when I did because if I would’ve taken a month longer, I would’ve been in a wheelchair. The doctor told me that the illness was progressing very fast and that if I wanted to play my sports again I would have to take all my medication every single day. I agreed and from that day forward it was a few rough months to get used to my new lifestyle. I was on many medications from Naproxen, Prednisone, Methotrexate, Enbrel and many more. That year I had the most depressing holidays because I wasn’t able to walk or do anything. My Juvenile Rheumatoid Arthritis made me change the way I lived my life. I never had a normal childhood because I was very limited on what I was capable of doing especially when it came to everyday tasks. I wasn't able to do things like shower on my own, put my clothes on, walk, grab a spoon and lifting my arm to reach my mouth, etc. and had my parents doing everything for me. It was never easy. As the years went by, I learned how to try my best to live a normal life. It took me a couple of years to get back on playing any sport. It's hard for people to understand that I have an illness. 12 years later, I am doing everything I want to do. I played sports and did many activities in high school and now I try my best to stay active the best way I can. Staying active has helped me manage my JRA and I do not let it stop me. There are times where I do get upset because my JRA starts acting up a bit, but I do not let it get to me. It has been a rough struggle, but I have managed to go through all the flare ups I’ve had to having no pain at all for a long time. I was in remission for about a year and I was able to lower most of my medication. I was down to taking my Enbrel every other week and taking Naproxen only when needed. In March, I was having a rough time and got bad news from my Rheumatologist. My Enbrel, which was the greatest medication I had been on was not doing anything to my body anymore. For the first time in the 12 years, my treatment was not working. I was switched to Humira and till this day, my body is not 100% okay. I still deal with random flareups as well as random stiffness and times where my body can't move on it's own without help of someone else. I’ve been through a lot to get to where I am right now, but I try my best not to lose hope and not give up. Dealing with JRA is not easy. I may look completely "normal", but I do have an invisible disability that slows me down at times. I hope that with this blog, I can teach many of you what it's like to live with an invisible disability as well as an autoimmune disease. This is my story of my diagnosis as well as how I managed my JRA a bit. Future posts will explain more of what JRA is and how it affects my daily life.
If anyone has any questions feel free to comment or email me :)
- Paula Valencia
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