enfermedades raras

2 petitions

Started 1 year ago

Petition to Sonia Martorano, Omar Perotti, Ginés González García


My name is Ayelén Angélica Luna, I am from Santa Fe Capital, I have just turned 15 years old. DNI 46.998.151 I have spastic cerebral palsy acquired by hypoxia, not neurodegenerative. The doctors no longer give me hope of any treatment. I have been quadriparetic for 9 months, I was hospitalized for 7 months with proxy sympathetic hyperactivity syndrome with all the symptoms on a respirator, I went through a lot of pain and hospital pathology, I was even caught by Covid 19 and now I am bedridden with the deterioration that this entails under the care of my mother and my sisters... With gastric button, tracheostomy, under a lot of medication that keeps me unconscious, but for the moment I am connected... It is very exasperating not being able to move, more than tears..., gestures I can to do... That leads to the despair of my family and all the people who love me... Our Faith, that of my Family, that of all the people who want to see me well is placed in God, I am also needing your help in signing this petition, because with your signature I hope to be able to receive financial help for the expenses of travel and stay to carry out the stem cell treatment, which I have a shift for June / 2021 to be held in Beijing China, at the Wu Stem Cells Medical Center Hospital for approximately 3 weeks and thus be able to change my sad reality and try to have a opportunity in my life...   GRACIAS !!!!!!

Gabriel Franklin
1,040 supporters
Update posted 2 years 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
20,581 supporters