Alejandra Perez Dell Real Self is defined as ‘World Calic’, which means ‘work addicted’. Until the CITP changed his life at the age of 33, when he had ten and three years of age, he had two children. It Rare disease He wants to mention its abbreviation in English because he says how complicated his full name is –Chronic inflammatory demailing polyinuropathy– He has stolen the senses and reduced the movement between many things. Today, in 51 years, there are up to 65,000 people living in Spain “Waterfall ”When she calls Immunoglobulin cycles It refunds feelings and quality of life.
According to a statement issued this week, 35,000 to 65,000 patients are “in a lasting situation.” Because their treatments can be done In Spain, if the production and access to hemodory is not guaranteed, a type of drugs, its production is based on the availability of human plasma and in them Spain should be imported 60%. The quality of life of the people suffering from some rare diseases, chronic pathology and primary immune disorders depend on these drugs that do not have the treatment. One of them is the chronic inflammatory demailing polyinuropathy, which Peraz Dell Real, is the president of the Association of Auto Immune Neurological Diseases with a hundred patients.
“My son hated me so much because Supermani became ‘Super Kekka’. It is impossible to do anything”. She took it better: “I’m so hard,” he says. Then he admits to his family as a “dangerous”, and she too “, but you change.” A sleeping foot began to notice, then the other leg, then went up and reached the hands. “I went to the hospital where I was scared.” At first they pointed out a Qualin-Barr syndrome, but six months later they found the CITP diagnosis.
In the middle of an autonomous and brick crisis, he says that he spent “some difficult years.” So badly that he decided that he did not want to be a burden to his family, and today, he prepares earlier steps to manage his ownership Compassive kill If it is needed. As she says, she no longer wants to stay “almost Tetra”.
“I haven’t even thought about my life before that. There is no meaning in it. This disease It leaves you like having a medieval armor that “to control yourself at the time, touch, feel … everything”. Alejandra is making a review 20 Minutos Writing uses a pen for children because it has your fingers. “I could write now because I had to learn again in his day.” In his case, the CITP made him lose mail, which affected his muscles and nerves. “It was like a Bellable. You have no control in your body. At other times you are like a hard company that you have complete erection. And in a few minutes you can go to each other,” he describes.
Each patient experiences the variation of this rare disease, for which there are no treatment or spread studies in Spain. According to European data, they estimate that a thousand cases have been identified per year in our country. Not everyone responds to the treatment of immunoglobulin in the same way. Alejandra Perez Real Real Real Year Real Estate -For those who accumulate monoglonal antibodies after seven years of cyclopasamid, a type of chemotherapy -a type of chemotherapy -a type of chemotherapy -one -two -year -old tosses in the hospital, to prevent mailine infection that includes its autoimmune system nerves Spends.
CIDP is a “invisible” disease. Two patients are related 20 Minutos Symptoms that are not appreciated in person or photos. Perez Tel speaks of real powerful and humor, but he defines ” A 90 -year -old is very brittle olderBut inside I notice ‘Clac’, ‘Clac’ and ‘Clac’. I don’t know what to live without pain, however, even if you finish practicing a part, that’s a serious thing, because it has become a boiling water on top, I have not learned. Now you are beautiful, ”he says when he spoke to this newspaper-, but this is a pure facade, I tighten myself when I come to my house. “
“It’s hard to think that you will never be one before”
For his part, Cubells calculates in telephone conversation, which was found after a “brutal fatigue” in December 2020, after the foot pain and his hands fell asleep (by the inflammation of the nerves). This father and athlete of the two little girls have become accustomed to swimming four or five days a week, athlete or athlete, and suddenly, “I can’t walk even ten meters in pain”. The great cancellation of the medical appointments that occurred during the infection benefited him, because he started with the “the next day” with trials, and in three months he changed his life.
After five and a half years, with treatment help, you can already talk about the matter quietly. “It’s hard to think that you are no longer going to be one before. Explain it and not be depressed. Maybe because I am a training physicist, I wanted to keep life under control, but I learned to live day by day I can’t plan a long holiday because I have to go to the hospital every two weeks. “
Cubels is “worried” Duty The president’s tax of the United States, Donald Trump. “I don’t know what to do if I don’t have treatment. I don’t know how my body will be formed, but I’m afraid to think about it,” he admits.
Without immunoglobulins, get worse again. In his case, only one time he had suffered a shortage, he had to return to the rotation of his immunoglobulin the next day, the next day, when he was jailed by Gov -199. “For this reason, he begins a message to promote citizens Donate the bloodAn act of considering “necessary”. “Thinking that one day you may need enough reasons to donate. It’s like traffic accidents: you never think that it is going to touch you. “
After cycles, this patient experiences side effects: the symptoms are triggered for two hours a “The largest” headache in the next two or three days. Then he improves, he feels tired, he spends the week until the effect is over – he says “no gasoline” – and his immune system reunited and attacks the nerves again. So, every two weeks. His life is “like a roller coaster: I am moderate to the rest of the hospital’s rest, but the next one I’m tired again.”
This is difficult, because “If you look at me in the photos, there is no pain and fatigue. This is an invisible disease, but any everyday act and even this conversation are tired,” he said, he had to listen to the reduction in the day and gives classes with the mask to protect themselves. “I have to measure a lot of times because the body passes a lot. If I travel two hours in the car, the next day I’m like I have two marathons“However, it does not abandon, and” at a very low level, and at a rhythm of the turtle “, because it causes many muscle pains, which refers to a” mental release. “