EL BLOG "UNA NUEVA PRIMAVERA" CUMPLE DOS AÑOS CON 8 000 VISITANTES

Fuente; Google

Hace dos años, surgió la idea de crear este espacio con el objetivo de exponer a la comunidad de pacientes con Neuromilietis Optica (NMO) o la Enfermedad de Devic, mis experiencias personales adquiridas desde que tengo el diagnóstico correcto y después de recorrer un largo camino de incertidumbres nacidas a partir de los signos y sintomas que presente y que fueron mal interpretados o, simplemente, ignorados por el personal médico.

Por otra parte, después de sufrir una Mielitis retroversa aguda (con todas sus secuelas...) y recibir el diagnóstico, comenzó otro camino, aún más escabroso que el anterior ya que la poca información acerca del manejo diario de la enfermedad, los anticuados tratamientos con sus lamentables consecuencias (anemia, leucocitopenia, alteración de las transaminasas, intolerancia a los carbohidratos, etc), me obligaron a comenzar a revisar constantemente toda la literatura especializada, y a estudiar las reacciones de mi popio organismo ayudandome de toda la experiencia acumulada en mis años como Master en Bioquímica e Invetigador Agregado.

Fuente: Google

En aquel momento, conté con el apoyo  de Stanford S.Siegel, presidente de Tranverse Myelitis Organization (www.myeilitis.org) quien, promoció este blog en el Journal of Tranverse Myelisits Organization (Vol.V, Enero 2011, pags. 109-110) y de SistaMoon Foundation,  quien reallizó un video con mi experiencias personales.

A ellos, otra vez, todo mi agradecimiento por su confianza en mi persona, en esta idea y por su apoyo.

Gracias tambien al  Guthy-Jackon Foundation  por su apoyo, y a todos los miembros del grupo My Devic's Family (NMO) por sus consejos, especialmente, a Grace Mitchel y a Jesus Loreto, así como todas las personas de mi entorno por su apoyo y su intinita paciencia.

A todos los lectores de este blog, MUCHAS GRACIAS....por consultarlo y por seguirlo.

Continuaré con este proyecto...y hago votos para que, en un futuro cercano, tengamos tratamientos personalizados y la calidad de vida de los pacientes con esta enfermedad, se incremente, para conseguir re.integrarnos a la sociedad actual y que ésta, nos acepte correctamente.

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.