Anita Botvin: “When I was diagnosed with multiple sclerosis, it was a relief. I thought that at least I wouldn’t die” | Society

When Salma Plaza was told she had multiple sclerosis, “time stood still” and she was “on the verge of fainting.” “It’s like my life suddenly went down the drain.” She is a fictional character, the main character of the novel. Fragility of bodies, recently published by Penguin. Its author…

When Salma Plaza was told she had multiple sclerosis, “time stood still” and she was “on the verge of fainting.” “It’s like my life suddenly went down the drain.” She is a fictional character, the main character of the novel. Fragility of bodies, recently published by Penguin. Its author Anita Botvin received the same diagnosis 12 years ago, but the reaction was very different: “I am a very hypochondriac and, having noticed tingling in my legs and countless tests, I expected something much worse. I saw my daughter-in-law’s illness up close and she was able to live a normal life. So I was almost relieved when they told me. I thought: At least I won’t die from this.”

Botvin (Madrid, 40) recognizes that the words “multiple sclerosis” resonate with many people the same way they resonated in his character’s head when he heard the news: “There’s no way this could happen to me.” my. “I can’t end up in a wheelchair, being so young.”

In his second book about the disease – the first, elephant feet, this was an essay― believes it can give “hope” to patients or relatives of those suffering from it. “Especially those who have just been diagnosed and are logically scared when they hear those two words. But we are very lucky because a lot of research has been done and very good treatments have been developed,” he explains.

In the 12 years since her diagnosis, Botwin has not had many flares, which are sudden and prolonged outbreaks of certain symptoms that, while not irreversible, can cause the condition to worsen. “I’m worse now, but also because time has passed and we’re all worse than we were 12 years ago,” he jokes. The tingling in his legs has gone away and he has no problems with mobility.

Multiple sclerosis is called the disease of a thousand faces because it can present and progress very differently in each patient. Botvin’s main symptom is fatigue: “My battery runs out sooner than I’d like. After seven hours there I see people as if they have nothing, and I’m tired, maybe I don’t understand anything. You have to control it a little and plan a lot.”

This is a typical case of multiple sclerosis, a chronic autoimmune disease that affects women in 70–80% of cases, very often of reproductive age, usually from 20 to 40 years, with an average age of 30 years. About 2,000 new cases appear every year. cases have been identified in Spain and an estimated 55,000 people are living with the disease; According to the Spanish Society of Neurology (SEN), there are 2.8 million of them in the world.

The disease destroys myelin, the protective layer surrounding nerve fibers that prevents the transmission of nerve impulses. Therefore, symptoms are very varied and often unpredictable; These include muscle weakness, difficulties with coordination and balance, vision problems, extreme fatigue and sensory changes. Its exact mechanisms are still unknown, but researchers believe it may be due to a combination of genetic and environmental factors, and is considered autoimmune because it is the immune system that mistakenly attacks the body’s own tissues. Recently, it was discovered that the main cause of mononucleosis is the Epstein-Barr virus from the herpesvirus family.

Until the mid-nineties, there were no drugs against multiple sclerosis. From then on, they began to spread and have made huge leaps since 2010, completely changing the prognosis of patients. Ana Belén Caminero, coordinator of the SEN Multiple Sclerosis Research Group, explains that in the past, around 10 or 15 years after diagnosis, there were usually problems with mobility, and then, after another few years, it was over. in a wheelchair.

New medications help control outbreaks. Since this disease is relatively new and progresses slowly, it is not known exactly how much it slows down its progression, but it is seen that quality of life is at least increased by a decade. “What we cannot do yet is control the independent development of outbreaks. That is, a neurodegenerative process that develops more slowly and manifests itself after many years,” explains Caminero, adding that there are cutting-edge studies that also try to solve this problem and which, at best, may be available. some years.

Life change

Despite the progress and the fact that his disease has clearly not gotten worse, Botvin doesn’t want to sugarcoat the effects of multiple sclerosis. Life changed him. She worked like freelance for the media and realized that the fatigue caused by her illness was preventing her from being as productive as the industry required. She looked for alternatives and started a company with other colleagues to see if, as her own boss, she could set her own pace. “I wanted to try, but in the end you have to work harder. I don’t want to discourage anyone by saying that you may have multiple sclerosis and your only symptom is a little blurry vision, like what happened to my sister-in-law,” he says. She decided to change her professional career, passed several competitive exams and today is an official of the Community of Madrid. He writes only for pleasure.

Now he is much more susceptible to infections. The immunosuppressive treatment she takes allows her to “get it all” and she has been extremely careful during the pandemic, for example. Her view of motherhood also changed dramatically: “I don’t talk about it too much, but I decided to give it up, and I wanted to be a mother at all costs. This is a very powerful life decision. Because it’s a disease where no one knows what’s going to happen, you don’t know how you’ll be tomorrow, and it seemed like a huge responsibility to bring life into this world.”

Also, try not to think too much about what the future will bring or how your disease will progress, because although the treatment works very well, it is impossible to predict your condition 10 or 20 years from now. “What’s most important to me is advocating for public health, which is still a really good thing because that’s what’s going to really help me and other people with MS,” he says.