PROMOCION DE ESTE BLOG EN EL JOURNALNOF THE TRANSVERSE MYELITIS ORGANIZATION

Este espacio ha sido promocionado en el volumen V de Enero del 2011 (págs. 109-110) del Journal of The Transverse Myelitis Organization (la organización dirigida a todos los pacientes, niños y adultos, con encefalitis diseminada, neuromielitis óptica,, neuritis óptica y mielitis transversa) (the organization advocating for children and adults with acute disseminated encephalomyelitis, neuromyelitis  optic neuritis and transverse myelitis) 

Queremos agradecer a   Sanford J. Siegel, Presidente de Transverse Myelitis Organization (www.myelitis.org) y editor de este Journal por todo el  asesoramiento, promoción y apoyo que nos brindan en cada momento desde los primeros momentos que este blog comenzó a existir.

Thanks for all..

Continuaremos, desde este pequeño espacio, tratando de que la Neuromielitis Optica se conozca un poco mejor tanto por el personal médico como por los pacientes y su entorno, así como informaremos acerca de los tratamientos clásicos y alternativos, de la necesidad del cambio en el estílo de vida, de experiencias de enfermos, y narraremos historias de enfermos que, desde su frente de batalla, han luchado por buscar su espacio en la sociedad.

A continuación, ofrecemos el artículo en cuestión:

Why It Is Necessary To Talk About NMO?

Amparo T Nisembaum. Alas, MSc

Tiberias Illit, Israel

Neuromyelitis Optica (NMO) syndrome or Devic‟s disease is an inflam-matory and autoimmune illness of the central nervous system, classified within “rare” diseases and affects mainly young people. It is character-ized by attacks of optic neuritis and myelitis, being able to produce blind-ness, great neurological disability and even the short term death.

Currently there is no cure for NMO and there are no treatments to com-pletely and effectively eliminate the possibility of multiple attacks. People are placed on immune suppressants to either increase the chances that an at-tack can be avoided or to decrease the severity of the attack should it occur. Therapies are centered on the treat-ment of the acute attacks, the medical prevention of the complications and rehabilitation. For these reasons, the care of Devic‟s patients is very com-plicated and challenging for the medi-cal professionals and there are signifi-cant challenges for the families that have a loved one with NMO.

My name is Amparo T Nisembaum Alas. I am 47 years old and was diag-nosed with  Neuromyelitis Optica in 2008. My first attack of optic neuritis occurred in 1990. I have since had re-peated attacks of acute myelitis. I have worked as a researcher in a clini-cal laboratory since 1986 and have a Master‟s degree in Biochemistry.

I have created a blog called “Una nueva primavera,” because I want to write about this rare disease.

http://unanuevaprimavera.blogspot.com/

My blog is in Spanish as I was born and raised in Cuba.

My blog is dedicated to helping people understand this condition and to pro-vide information about the primary signs of this disorder, the recent mo-lecular biology and immunology re-search on NMO, the possible new treatments, and the many difficult symptoms of NMO, including fatigue and the changes in the behavior of pa-tients.

I also use my blog to talk about and to share my personal experiences with this disease; my diet, my participation in sport, my experiences with depres-sion, the methods I use to control stress, and the treatments I use to treat chronic pain. My blog also includes many of my photographs.

I hope that by sharing my blog with others, it will help people with NMO to better understand their own condi-tion, and I hope that this site is helpful particularly for the many Spanish-speaking peoples of the TMA who have the NMO diagnosis. I also hope that my blog is an inspiration and mo-tivation to the many clinicians and re-searchers who are devoted to improv-ing the quality of lives of people with this very challenging disorder. So many people with NMO are young; finding the answers to this difficult condition will ensure that all of us are able to make our contributions to future society.