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La Historia De Enrique: Mi Historia Con NMO/MOG

Mi nombre es Enrique Chávez, soy de la Ciudad de México y me diagnosticaron NMO en octubre de 2021.

Enrique Chavez

Mi vida solía ser perfecta. Tengo y dirijo mis propias empresas, aparecí en un programa de televisión internacional, tengo una familia amorosa y muchos amigos. Solía ​​viajar mucho dentro de mi país y también a nuevos países alrededor del mundo. Todo era perfecto. Creí que era indestructible y que estaba escalando la cima de la gloria.

Todo comenzó con una faringitis normal. Primero creí que tenía covid porque los antibióticos no estaban funcionando. Tenía muchos planes para esa semana, así que no podía permitirme enfermarme, hasta que un día me desperté con mucho entumecimiento y no podía deglutir nada.

Mi vida se detuvo en horas. No podía concentrarme y apenas podía hablar. Mi familia me llevó al hospital porque comencé a tener dificultad para tragar agua, alimentos y medicamentos. Nadie sabía lo que me estaba pasando. Mi cuerpo comenzó a dejar de funcionar y nadie lo sabía.

Pasé la primera noche en el hospital y al día siguiente tenía visión doble, dificultad para respirar y expulsar las secreciones en mis pulmones debido a una neumonía que presentaba. Los médicos supieron entonces que se trataba de un problema neurológico.

Enrique in the hospital

Me hicieron todos los estudios, la punción lumbar, resonancias magnéticas, análisis de sangre y todo lo necesario para diagnosticarme. Tuve mucha suerte de tener un seguro porque en mi país es muy caro.

Al día siguiente me metieron en la Unidad de Cuidados Intensivos pero en la noche me empecé a ahogar con mis propias secreciones y eso me hizo tener un ataque respiratorio por lo que me intubaron.

 

Me desperté 8 días después, intubado, con catéteres en el cuello y totalmente paralizado de las piernas y el brazo derecho. Solo podía mover mi mano izquierda, así que la usé para comunicarme usando un tablero con letras.

Me dieron todos los tratamientos, antibióticos para la neumonía y faringitis, esteroides para detener el ataque neurológico y cinco sesiones de plasmaféresis para limpiar mi sangre y comenzar mi recuperación.

Los días y las noches en la UCI fueron muy duros, sin saber lo que me estaba pasando. Me ahogaba constantemente con mis secreciones, por lo que las enfermeras tenían que aspirarme a cada hora. No podía moverme, respirar, hablar ni ver. bien No sabía cómo iba a ser mi vida después de eso. Definitivamente fueron los días más duros de mi vida…

Empecé con terapia física y respiratoria, luego tuve que volver a aprender a deglutir. Tuve que aprender casi todo de nuevo: cómo moverme, caminar, comer. Nadie valora las cosas simples de la vida hasta que las pierde, y yo estaba perdiendo mi autonomía, mi vida, mis metas y expectativas.

Enrique being helped with walking
Enrique in a wheelchair

Con suerte, mi cuerpo comenzó a recuperarse bien. Cada día estaba lleno de logros en cuanto a mi movilidad. En dos semanas pude levantarme de la cama y dar unos pasitos con ayuda. Comencé a visualizar una nueva vida, una nueva oportunidad.

Mi familia estuvo allí para apoyarme, mis amigos me apoyaban en el exterior y me sentía lleno de amor y energía curativa. Estaba en el mejor lugar para estar y sabía que estaba recuperando mi vida.

Semanas después recibí la primera dosis de Rituximab y luego llegué a casa para continuar con mi recuperación.

Ahora puedo caminar, correr, nadar, bailar y saltar. Recuperé toda mi movilidad. Estoy respirando de nuevo sin la ayuda de oxígeno o alguna máquina. Puedo hablar y recuperé mi vista al 100 %.

 

Mi vida cambió de un día para otro, pero estoy seguro que esta es la mejor vida que pude tener y la voy a vivir con esmero, con amor y con toda la energía para disfrutar.

Enrique standing with his arms spread, happy

Por Enrique Chávez

Enrique’s Story: My story of NMO/MOG

My name is Enrique Chávez, I’m from México City and I got diagnosed with NMO in October 2021.

 

 

My life used to be the perfect one. I owned and ran my own companies, appeared on an international TV show, had a loving family and a lot of friends. I used to travel a lot inside my country and also to new countries around the globe. Everything was perfect. I believed I was indestructible and that I was climbing the edge of glory.

 

 

Everything started with normal pharyngitis. First I believed I had COVID because the antibiotics weren’t working. I had a lot of plans that week so I couldn’t afford to get sick, but one day I woke up with a lot of numbness and I wasn’t able to swallow anything.

 

My life stopped in hours. I wasn’t able to concentrate and I barely was able to talk. My family took me to the hospital because I started having difficulty swallowing water, food and medicine. No one knew what was happening to me. My body started to stop working and no one knew why.

 

 

I spent the first night in the hospital and the next day I had double vision and difficulty breathing and expelling the secretions in my lungs due to a pneumonia I was presenting with. Doctors then knew that it was a neurological issue.

 

 

They gave me all the test: the lumbar puncture, MRIs, blood test, and all those necessary to diagnose me. I was so lucky I had insurance because in my country it is very expensive.

 

The next day they got me into the Intensive Cares Unit but in the night I started to drown with my own secretions and that made me have a respiratory attack, so they intubated me.

 

 

I woke up 8 days later, intubated, with catheters in my neck and fully paralyzed in my legs and my right arm. I was only able to move my left hand so I used it to communicate using a board with letters.

 

 

They gave me all the treatments: antibiotics for the pneumonia and pharyngitis, steroids to stop the neurological attack and plasmapheresis to clean my blood and start my recovery.

 

 

Days and nights in ICU were so hard, not knowing what was happening to me. Constantly drowning with my secretions, so nurses had to suck them out of me every hour.  I was not able to move, breathe, talk or see. I did not know how my life was going to be after that. The hardest days in my life…

 

 

I started with physical and respiratory therapy, then I had to learn again how to swallow. I had to learn almost everything again: how to move, to walk, to eat. No one values the simple things in life until they lose them, and I was losing my autonomy, my life, my goals and expectations.

 

 

As time went on, my body started recovering well. Everyday was full of achievements in terms of my mobility. In two weeks I was able to get up the bed and take some little steps with help. I start visualizing a new life, a new opportunity.

 

 

My family were there to support me, my friends were supporting me on the outside and I was feeling full of love and healing energy. I was in the best place to be and I knew I was recovering my life.

 

 

Weeks after, I received the first dose of Rituximab and then got home to continue with my recovery.

 

 

Now I am able to walk, run, swim, dance and jump. I got back all my mobility. I am breathing again without the help of oxygen or some machine. I can talk and get back to normal vision.

 

My life changes from one day to another, but I’m sure this is the best life I could have and I’m going to live it with care, with love and with all the energy to enjoy.

Massachusetts General Hospital
Harvard University

Michael Levy, MD, PhD

Dr. Levy is an Associate Professor in Neurology who was recently recruited to lead the new Neuroimmunology Division at the Massachusetts General Hospital. His mission is to build a combined clinical and research neuroimmunology program to develop therapies for patients with autoimmune diseases of the central nervous system. Dr. Levy moved from Baltimore, MD, where he was one of the faculty at Johns Hopkins University since 2009 and Director of the Neuromyelitis Optica Clinic.

Clinically, Dr. Levy specializes in taking care of children and adults with rare neuroimmunological diseases including neuromyelitis optica, transverse myelitis, MOG antibody disease and acute disseminated encephalomyelitis. In addition to four monthly clinics, Dr. Levy is the principal investigator on several clinical studies and drug trials for these conditions.

In the laboratory, Dr. Levy’s research focuses on four main areas:
1. Development of animal models of neuromyelitis optica (NMO) with the goal of tolerization as a sustainable long term treatment: His team generated a mouse model of NMO based on pathogenic T cells reactive against the aquaporin-4 water channel. Now, they are using this mouse model to create a tolerization therapy to desensitize the immune response to aquaporin-4.
2. Genetic basis of transverse myelitis: His team discovered a genetic mutation in VPS37a found in a group of patients with a familial form of transverse myelitis (TM). To understand how this gene is involved in this immune process, they generated a mouse model with this mutation.
3. The immunopathogenesis of MOG antibody disease: This may depend on a subset of T cells called gamma/delta T cells. These specialize T cells react to MOG in mouse models and attack the central nervous system. In addition to understanding why and how these T cells are involved in MOG antibody disease, they are developing a treatment to target these cells.
4. Biomarker assays for other autoimmune diseases of the central nervous system: They are developing assays that detect autoreactive T cells in NMO and MOG antibody disease. In parallel, they are screening for novel antibodies to glial cells in related disorders such as encephalitis and optic neuritis.