Topic

enfermedades raras

2 petitions

Update posted 8 months ago

Petition to NORD , National Organization for Rare Disorders, WHO, World Health Organization, Tedros Adhanom Ghebreyesus, PAHO , Pan American Health Organization, Carissa F. Etienne

More investigation for Achalasia

Achalasia is a rare disease that consists of the inability to relax the smooth muscle fibers of the gastrointestinal tract at any site of union of one part with another. It is said, especially, of esophageal achalasia, or the inability of the gastroesophageal sphincter to relax when swallowed, due to degeneration of the ganglion cells in the organ wall. The thoracic esophagus also loses normal peristaltic activity and becomes dilated producing a megaesophagus. Esophageal achalasia or simply achalasia is a rare disease in which the esophagus is unable to carry food to the stomach. The disease affects both sexes and can appear at any age, however, it is usually diagnosed between the third and fourth decade of life. Its incidence in the United States and Europe ranges from 0.5 to 1 per 100,000 inhabitants. Achalasia, among other things, causes muscle spasms in the esophagus compared to a heart attack, which can last several minutes and cause intense pain that can appear at any time of the day or night, waking the patient thinking that he is having a heart attack. In addition, it is impossible for them to eat like a normal person, so the achalasia implies a considerable loss of weight and muscle mass, and can cause the person to end up being completely malnourished with the problems that this causes. The most common solution is to operate on the patient by making a series of incisions in his abdomen that, apparently, will relieve pain for a long period of time, since the disease has no cure today. But that operation does not work in all cases. Achalasia patients are also people and need to hear more than "this is an incurable disease, we can give you these painkillers (which then are useless) and will relieve your heartburn a little" Medicine should advance in all fields equally, since the fact that it is a rare disease does not imply that these people have to suffer throughout their lives and that they see how they die slowly due to the lack of vitamins in their body by not to be able to eat. Achalasia NEEDS a cure, and if it is not possible today, it needs at least a treatment that allows a normal life as it has been done with cases such as HIV. Please sign and share as much as possible even if you are not sick with achalasia, there are people who cannot even drink a cup of milk while you inflate yourself to eat hot dogs.

Marina González
19,788 supporters
Update posted 2 years ago

Petition to Banco Santander, Papa Francesco Bergoglio, BBVA, Nickelodeon, Discovery Communications, FOX News, Netflix, Cartoon Network, Nintendo, NIKE, CenturyTel, Walt Disney, Jeff Bezos

JuanDa, de 4 años sanaría en Tailandia. Ayúdanos a llevarlo! #Juandamejoraentailandia

#juandamejoraentailandia ¡Juanda podrá ver y crecer mejor con un tratamiento en Tailandia, ayúdanos! Juanda will be able to see and grow better with a treatment in Thailand, help us! Juan David es nuestro pequeño de 5 años diagnosticado a los 3 meses de nacido con una 'enfermedad rara' llamada Síndrome de De Morsier, o Displasia Septoóptica, en la Clínica Colombia en Bogotá; sus nervios ópticos no están sanos, no tiene quiasma óptico, cuerpo calloso, ni algunas hormonas; todo esto le resta a su desarrollo global y cognitivo y a su visión por supuesto; sin embargo es un niño feliz, inteligente y amado, está en pre-kinder y va a terapias... Pero sus papás queremos agotar todas las opciones y lo que sea posible para su mejoría. Hay un tratamiento para él, solo que es en Tailandia, en el Hospital Better Being con la tecnología Beike, que resulta muy costoso por supuesto, y es por eso que requerimos de tu ayuda para reunir 49mil dólares con plazo hasta julio de 2021. Mi cuenta en Colombia Davivienda 0550488407566485 ahorros María Fernanda Serrato / Daviplata 3195982711 / Nequi 3144317887 Ayúdanos! Él es nuestra luz, y nosotros + ustedes seremos la de él ! :) Sigue la campaña con #JuandamejoraenTailandia ...Gracias!!! (Por supuesto enviaré avances de la campaña y del tratamiento). Juan David is our 5-year-old boy diagnosed at 3 months of age with a 'rare disease' called De Morsier Syndrome, or Septo-Optic Dysplasia, at the Clínica Colombia in Bogotá; his optic nerves are not in good shape, he has no optic chiasma, corpus callosum and lacks some hormones; all these keep him from his overall and cognitive development and his vision of course; However, he is a happy, intelligent and beloved child, he is in pre-kindergarten and goes to therapies ... But his parents want to exhaust all the options and what is possible for his improvement. There is a treatment for him, just that it is in Thailand, in the Better Being Hospital with Beike technology, which is very expensive, of course, and that is why we need your help to raise $49,000 with a term until August 2020. My account in Davivienda 0550488407566485 savings, María Fernanda Serrato. Colombia. Daviplata 3195982711 / Nequi 3144317887 Help us ... He is our light, and with your help, we are his light forever! Thank you! Follow us with #JuandamejoraenTailandia (Of course, we will send progress of the campaign and treatment).  

María Fernanda Serrato Rodríguez
38,117 supporters