How A 33-year-old Woman With SMA Lives

How A 33-year-old Woman With SMA Lives
How A 33-year-old Woman With SMA Lives

Video: How A 33-year-old Woman With SMA Lives

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Elena Bychkova, a 33-year-old resident of Novokuznetsk, has type II spinal muscular atrophy. Despite the illness that limited her mobility, the woman lives in full force: she is engaged in life coaching and runs her program on YouTube. RT talked to Elena and found out why she is not yet going to fight for medicines, how to learn to accept herself as you are, and where to find the man of her dreams.

Elena Bychkova's parents learned about the diagnosis of type II spinal muscular atrophy when the girl was only 11 months old. Little is known about SMA even now - and even more than 30 years ago. The doctors said that Lena would live a maximum of three years, and her mother was advised to give birth to another child.

People diagnosed with type II SMA usually live longer: the disease progresses more slowly than patients with type I - those usually do not live to be five years old. However, in both cases it is a deadly disease in which the neurons responsible for movement are gradually destroyed, the skeletal muscles atrophy, and often the muscles responsible for breathing. Medicines for SMA have appeared only in recent years, two of them (Spinraza and Evrisdi) have only recently been registered in Russia, the existing drugs are considered one of the most expensive in the world.

Now Elena Bychkova moves around the city in a wheelchair and tries to lead an active lifestyle: she is engaged in life coaching, leads projects for women, in which she explains how to learn to accept oneself. She also has a program on YouTube "On the opposite", where she invites Novokuznetsk businessmen. RT talked to her about how people with SMA live after 30 years.

"We just started to live"

- What was your childhood like?

- I was raised like an ordinary child. The same demand, as well as from everyone, there was no indulgence. Therefore, I have always felt equal with others. I was confident and independent - this was facilitated by the fact that there was no excessive guardianship on the part of my parents.

I have heard many times that someone with a disability was bullied at school. I didn't have that, because I could answer. I went to regular school, though only twice a month, because I was homeschooled. I did my homework, and then went into the yard with my friends to play hide and seek or the rubber band, which I always kept. I never felt superfluous among friends.

- How were you treated in childhood and how do you maintain your health now?

- At the age of seven, I was taken to the United States. At my father's job, the bosses refused to travel to the Canary Islands and gave this money to show me to doctors in Los Angeles. This trip turned my mind upside down, because I saw that there were still people in wheelchairs, and I realized that I was not alone.

In the USA, they gave us a good prognosis, they said that I might even walk, but on a walker, and they advised me to lie on my stomach for 18 hours so that my spine would not move. It was also necessary to do a set of exercises.

When we got back, my parents were constantly studying with me. For example, they did stretching so that there were no muscle contractures, that is, a state when there was a limitation of the range of motion and the limb could not bend or unbend. But it still appeared for me, because the SMA takes its toll. Therefore, at some point, we spat on classes and started just living.

I am currently not on medication for SMA. I am a bad patient with a terminal illness. I drink only vitamin D and omega-3, but this is more so that the skin does not dry out.

- But what about "Spinraza" or other drugs that stop the development of the disease?

- Many are now fighting for Spinraza, but personally I am not ready for this drug. It scares me that the drug should be injected into the spinal cord.In addition, I do not know how the injections of this drug will affect me at this age. I do not try to dissuade others, but I personally decided so for myself.

Quite recently, on November 30, a second drug, "Evrisdi", was registered in Russia. I have more confidence in him: you can take it at home, you don't need an injection, you just swallow the medicine. I tried to get into the pre-registration groups for access to the drug, which were organized by the manufacturers, but, unfortunately, this required an agreement from the main city hospital, and my neurologist said that no one needed this and he would not be able to help me with this. In this case, I did not find understanding on the part of the doctors.

I am rapidly losing strength, especially for the past two years. When I understand that the drug is really necessary for me, then I will fight. Although so far it is only known that Eurydie will go on sale in May 2021, but how it can be obtained and how much it will cost is unclear.

But so far this question is not relevant to me, and, frankly, people have a dissonance when I say that it is important to live happily and long, but I myself am not seeking medicine. In my opinion, the energy that I spend on trials and waiting for drugs, I can use for something useful. But those who have small children need to fight for the cure. And let the same "Spinraza" go to kids who have a whole life ahead of them.

"SMA is a part of you"

- How do you assess the awareness of our society about SMA?

- I am glad that they began to talk about SMA. When I was growing up, I thought that I was alone in Russia with such a disease, but then I found out that other people who faced a similar diagnosis also thought the same.

However, what is happening in the country with the receipt of medicines is a real war. Hope the situation improves soon. So far, I am just watching from the sidelines the news, the hype around Spinraza. To be honest, it's hard to believe that everyone who needs her will start stabbing her.

- How did you manage to accept your diagnosis?

“It scares me when I read that people with SMA hate and curse their condition. It's a part of you, how can you hate it? People spend an unacceptable amount of strength and energy on hatred.

I never had a deep desire to get up and go. I knew it wouldn't happen. Well, why then suffer because of this, when you can, for example, dream of a dog? The fact that I will not walk is an unconditional story, to which I am calm. I understand that my life is filled with special meaning only thanks to SMA. It's just that at some point you accept the diagnosis and think: what can it teach, what can it give? What can I do so that my life is also useful to someone?

- You started helping others through life coaching. How did you come to this?

- I communicate with many mothers who have special children. For them, I taught courses where they took care of themselves: they went to photo shoots, to a beautician, and attended floristry classes.

I wanted them to be able to take time for themselves and gain strength, at least to distract themselves a little. Especially considering the bitter experience of my mother, who was deeply depressed, she was not happy even with my successes.

I understood that I had no right to advise them something more serious, because I did not have the appropriate education. So I graduated from the Novosibirsk Academy of Coaching, and in the summer I took a course at the European Business Coaching Center.

Now I have launched a course on self-acceptance and self-love, which has matured all my life. In the courses, I tell women: what you can change in yourself, change. Despite the fact that I had a crooked body and a hump for some time, I changed my hairstyle, eyebrow shape, clothes and makeup. And just as important is how you feel inside. But the presence or absence of men does not affect your happiness.

"My husband carries me in his arms"

- How did you yourself build your relationships with men?

- Previously, they perceived me as their kind of boyfriend.Sharing experiences about relationships with other girls - this is a rather offensive and unpleasant feeling, of course. At the age of 25, I underwent surgery in Finland, after which my spine straightened out and I began to look better. Four months later, I had my first boyfriend, and after another three months I met a man with whom we have been together for eight years.

- Tell us about your husband.

- Sergey is 12 years older than me. He is very caring. We met quite corny: on a dating site. I basically exhibited photographs there, where my stroller was visible, so that everything was immediately clear.

A month later I went on a date, and it, of course, was an absolutely unforgettable day. During our walk, a downpour began, we got wet, and the rose he gave me wilted. We hid from the rain under a tree. To top it off, on that date, as I call it, my head fell. This is due to the weakened neck muscles when I either turn sharply in the wheelchair, or, for example, hit a stone.

After the date, my dad picked me up in a car. I thought that Sergei would never call me again, but he dialed my number in just a couple of hours to chat and find out how I was doing. And the drooping rose rose and then stood in the vase for a long time.

My husband helps me in everything: he turns me over, carries me in his arms, helps me take a shower, pulls my hair into a ponytail, cooks and takes me by car on business, if I ask. And my assistant cleans the apartment.

- Do you yourself move around the city?

- I have in my head something like a map with available places in the city, where I go and where I feel comfortable. And places that I cannot visit in a wheelchair simply do not exist for me. But there are locations that I cannot go to, to my great regret. For example, the Ice Palace, where many concerts of my favorite performers take place.

In general, of course, the inaccessibility of the urban environment for people with limited mobility is striking. It is especially interesting why people are not invited to test objects in different wheelchairs and with different diseases. Someone's hands are strong, while others, like mine, are weak - accordingly, a special angle of inclination is needed. I would like the officials themselves to get on a wheelchair at least once and try to get off the ramp that leads somewhere into the wall.

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