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Fernanda Sesifredo and Celeste Fé have multiple sclerosis and have not prevented the dream of becoming a mother despite all the contraindications. It is a degenerative and unpredictable disease that progresses but does not kill. However, science jumps and advances.
At 21, Fernanda Sesifredo was a mother for the first time. Sofia was born and a few months later, a bad sign. Fernanda woke up with facial paralysis, speechless, out of place, doctors talking to her in a depression. It did not make sense. "I was fine, I did not feel anxious, I knew the diagnosis was wrong."
She did not even touch the pills. Some time later, the right arm lost strength, tests were performed and neurological changes were detected. It was a head tumor or multiple sclerosis. He had a terrible fear of the first possibility, the second he had no idea what it was.
The second and the shock were confirmed when the doctor opened the game. "I realized that I had a serious degenerative disease, with very unpredictable evolution, which could worsen from One day to the next, "he recalls. She worked in the room Redondo, in Alentejo, in the office of communication, she took care of the website, the cultural agenda, the media advertisement, she was a writer.
Fatigue seized his body, his legs lose strength, he has not moved for a year, the cognitive part of the numbers is compromised, his cane becomes a permanent companion. In 2010, he left his job. "I have to relearn how to live, it's a very reserved life at home, in my space, but I have to enjoy life by doing things that make me happy, especially by writing." The writing, his great love.
In the midst of all this, she wanted to become a mother again despite warnings that the disease could worsen. Carlota was born in 2001. The nine months have not been easy. "It was not a pregnancy I liked, I was looking forward to the next moment to find out what the next step would be," recalls Fernanda, 45. Everything went well, but the health of the girl, who never left her, caused a bad feeling.
In April of last year, Carlota participated in the National Championships of Athletics in Porto. On the eve of the tests, he lost his sensitivity to the armpit and a few hours later he had no strength in his right arm. He did not compete. São João Hospital, Porto, at Évora Hospital, without force on the right leg. Examinations, hospitalization, brain damage transferred to Lisbon, additional examinations and diagnosis of aggressive multiple sclerosis.
He stopped doing sports, left the dance, got tired very easily and did intravenous treatments once a month. He is in the 10th year of the humanities and wants to represent. "Since my childhood, I've always dreamed of being a theater actress," says Carlota. The illness forced him to rebuild his life and the confrontation was complex. "At first, it was a little strange what was going on, to be sick, it's strange.Today, I can have a normal life, I do everything I want. "
Learn to say sclerosis
At 24, Céleste Fé, now 49, was Ana Rita's mother. Four years ago, I was in a hospital bed with a diagnosis of multiple sclerosis. The symptoms of the illness were confused until they became clear. He spent adolescence with the right leg numb after penicillin injections. At the age of 15, he loses his mother and the signs of the body mingle with the pain of the soul. At age 20, a numbness that started at the feet and who reached the waist led her to the health center, hence an emergency, where a month and a half of hospitalization .
First, he denied the evidence, and then reacted. "I spent two years learning to talk about sclerosis," he says. During the day, he paints Coimbra pottery by hand. He studies at night to finish his 12th year. I wanted to be a mother. The will eventually defeat the medical warnings. "I wanted to take the risk and I had great support from my family doctor." It was not easy. "I lived my pregnancy with a lot of pressure in my head." Multiple sclerosis could worsen. I leave with a day and an appointment and a team of neurologists on call. Ana Rita was born and Celeste was struck by extreme fatigue that took her voice away. But always with the concept of everything and the confirmation that a birth is a miracle of life and the best sensation in the world. "My daughter is the apple of my eye." She is 25 years old, is a teacher of Portuguese and Spanish, it's her life.
The disease has not left her alone, she has had several hatching after birth, she has several lesions in the brain and bone marrow, she can not stay up long, she takes a bath. Despite everything, and extreme fatigue when you wake up, you do not give much to the bed and the sofa. "I walk without support, but I walk very slowly." And science is struggling to explain its recovery. "Because of the location of my brain lesions, you should not walk in. They tell me my wounds are iron."
Huge weight
Madalena Martins, 58, has two daughters, Ana Sofia, 38, and Ana Rita, 30. Sclerosis is a recent disease, diagnosed a little over a year ago, after further consultations and consultations, leg pain that she suspected. were varicose veins, unexplained falls and a walk to them. "I was in the street and suddenly, I was on the floor, out of nowhere." An enormous weight on her left leg, which blocked her steps, led her to the hospital and discovered her illness.
She stayed in neurology for two weeks and realized that her life was going to take a turn. "I was very active, very independent, I started working very early because I did not want to study, and suddenly," tau "was a work of art. Always returned to his tobacco shop in downtown Coimbra, but could not stand, this year he went to a medical council, retired with a disability of 70% .He did physiotherapy to recover the walk, was helped by a cane, a bench in the tub, cushions in the car seat of the passenger.It healed, tries to walk every day and goes every four weeks to the hospital for injectable medications. "I never thought that I would recover as well, I also have the will." And the total and unconditional support of the girls and their husbands, Jorge Manuel.
Illness without motive
Multiple sclerosis mainly affects women and manifests itself at an early age. It is a disease that disrupts the immune system, which attacks healthy cells as if they were intrusive. "We do not know very well the cause of the disease, it is thought that it is the defense system of the body that develops an inflammatory response," said Carlos Capela, neurologist at the hospital Capuchos of Lisbon.
"The main anxiety of a patient with multiple sclerosis is that the disease is not trendy.Nobody knows, from the first diagnosis, how would you be in 30 years if you lead a normal life with more or less drugs, "says Susana Protasio, vice president of the Portuguese Multiple Sclerosis Society (SPEM), which offers several services and supports patients. At present, one of the battles of SPEM is to register a national patient, integrated with a European project.
Last month Merck, the 350-year-old oldest pharmacist in the world, organized a congress in Berlin bringing together specialists in the research and treatment of multiple sclerosis. Between conferences and knowledge sharing, a new clinical trial on a drug that can fight against all the mechanisms of sclerosis has been announced. She has published an international study on caregivers and a world premiere of the documentary "Seeing Multiple Sclerosis of Inside Out", with an Argentinian patient, a caregiver from the United States and an Italian health professional. Intense and real testimonials of those who live and feel the illness that intertwine in conversations with artists who have personalized these experiences in portraits.
What about caregivers?
A study of 1,000 caregivers in seven countries – the United States, Italy, France, Germany, the United Kingdom, Spain and Canada – reveals that 48% of multiple sclerosis caregivers assume this role when they have less 35 years old. Some figures show the impact of the disease on the lives of caregivers: 43% feel changes in mental and emotional health, 44% speak of negative impacts in future plans, 34% ensure that this will have repercussions their financial and professional situation.
Maria Rivas, Vice President of Medical Affairs at Merck, emphasized the importance of communication between professionals and patients who "sometimes are not focused on the same issues". One in three caregivers spend eleven years caring for a patient with multiple sclerosis. with the resulting physical, emotional, professional and financial consequences ".
Merck, who created the first short-term oral medication for recurrent forms of the disease, allowing her to be monitored for four years and facilitating the planning of a pregnancy, is preparing a clinical trial for a new therapy . "It will be a different mechanism for not destroying the cells, not weakening the immune system, not having side effects," said pharmacist Andrew Paterson.
During the congress, a house was set up to experience what it means to live with multiple sclerosis: difficulty getting up from the couch, kitchen objects with inconceivable weight, confusion in the decoration of information, concentration problems related work tasks such as answering e-mails and answering phone calls. A way to feel on the skin what it means to live with an illness that will paralyze the body and baffle the head.
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