What is spinal muscular dystrophy? "I regret blaming my parents for my illness." There is no cure for heredity?

 

Just because a healthy person has a cold for a while, he or she regrets thinking about the reasons or causes such as "I shouldn't have slept in thin clothes that day" and "I shouldn't have gone out with people." But when the disease is hereditary, there's no cure, there's no progressive, where do people think and how do they try to compromise with reality?Akira Ki was diagnosed with spinal muscular dystrophy (SMA) at the age of two. It explains many conflicts, from despair that there is no cure and that it will continue to go on to life today.

I hold hands with my mom...

When did you feel uncomfortable or out of shape at first? What was the situation?

I don't have a clear memory, but according to my mother, when I was two years old, when I was walking hand in hand, I suddenly fell down in a place with nothing, so I thought it was strange and took him to the hospital.

Please tell me the details from examination to diagnosis.

He went to a hospital specializing in such diseases such as muscle dystrophy, and immediately diagnosed spinal muscular dystrophy (SMA) after seeing a movement pattern characterized by standing up while falling. It seems to happen because the muscles in the trunk alone can't happen.

What kind of disease is it?

Spinal muscular dystrophy is a disease in which the strength of the whole body is slowly lost. There are individual differences in the speed of progress and where it is conducted. In addition to general movement skills such as standing and walking, breathing, swallowing things, and maintaining posture also affect those functions because they use muscles.

What kind of treatment or rehabilitation have you received?

The most difficult treatment was when scoliosis developed as a complication. I underwent surgery in the summer of my fourth year of college after hearing that "I can only lie down if I keep this way," as my back bone is bent and pressing the nerves around me due to a decrease in muscle strength that supports my body, such as back muscles and abs. It was called spinal fixation, which was an operation to fix the backbone with implants, but anyway, it was really hard because my body couldn't stand the severe pain and also had pneumonia.

What kind of treatment are you doing now?

Now, he is receiving a new drug called "Everysdi" around the fall of last year and visiting rehabilitation twice a week. "Egrisdi" is a medicine for improving and maintaining motor function in patients with spinal muscular dystrophy. I don't really feel like I'm being treated.

Mother's Death and PTSD

When the diagnosis was made, I was still young and didn't realize it, but as I entered puberty, I became conscious of the disease even if I didn't like it.There was a time when I felt the gap with my surroundings especially strong because I went to class, and I blamed my parents for the disease because I was deeply depressed with unfairness. I went through a lot of conflicts, and it took time to figure out that "gap or hand has no choice but to fill it with effort."

Please tell me what has changed before and after the disease.

Opportunities related to people have increased absolutely. Even when I became a wheelchair life, I used to stumble and shop, eat, or have a bathroom alone, but now I need help from people whatever I do. I hated it at first because I thought it would be annoying to ask helpers, friends, and people on the street, but now I realized the importance of conveying myself as it is, "I like this and I want to go here, so I want to help."I have the courage to tell my friends, "I want to talk a lot with you and eat, but I can't do it, so please help me."

Do you have any regrets after looking back so far?

You've blamed others for it' My mother suffered from mental illness due to the stress of raising a disabled child and killed herself when I was 20. I blamed my parents for this disease and there was a time when I couldn't stand a fight because I didn't get along with my mother. I regret that there would have been some other consequences if I could accept the disease or my own life earlier. After my mother died, I continued to suffer from PTSD (Post Traumatic Stress Disorder) symptoms. However, nothing changes even if I do so, so I will not forget this reality and remember it as a lesson.

Since it's progressive, there's nothing we can do right now.

After graduating from college, he opened an administrative librarian office and is now in his sixth term, and he is enjoying his life as a human being by taking charge of various corporate executives and learning as a manager. I'm being beaten day by day, but I'm being scolded by the doctor because I've been beaten too much (lol).

You're very active.

When I realized that I was sick, I realized that there were so many things I couldn't do and I was in despair. Looking at the reality now, there is less I can do alone than others, but it is a progressive disease, and what I can do now is disappearing in the future. It's you who choose to give up there or try to overcome it. When I was forced to make a decision, I decided to choose the effort side.

Are you saying you won't give up?

Of course, it was impossible not to give up everything in reality. For example, even if I work, I gave up on a better path than others in using my body. Instead, I chose the path to win with knowledge. Likewise, I gave up on enjoying time with my friends by moving my body and chose the way to enjoy myself with others. I enjoy shopping with my friend or I am working as a model. There are a lot of people who are quite easy to give up on being stylish in a wheelchair. Of course, it wasn't an easy path, but I learned the importance of hanging on, whether it takes some effort or sometimes it's hard, rather than throwing it away, "I can't do this because it hurts."

Is there anything you want from a medical institution or a healthcare worker?

Medical technology is necessary to live as a living thing, but we, patients with incurable diseases, basically have to live with the incurable disease for the rest of their lives. When it comes to social life after a certain medical and nursing life, you have to live in harmony with the disease. It's a personal story, but I hope this patient will be paid attention to the social life surrounding the patient, what kind of work he usually does, what hobbies he has, and what friends or lovers he has.

I think I could have accepted my own disease earlier if I had known this media in the early stages of the disease outbreak. I remember not having an object of admiration to think, "I want to be like this," at a time when I was thinking about accepting the disease on my own disease. So now, on the other hand, I'm struggling every day to be that kind of object. I hope we can help you create a structure, mood, and society where you can enjoy your life even during your illness through the transmission of these media and sharing your information.

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Akira Kiki, who chose to enjoy her life as a human being through various conflicts, felt tenderness and strength at the thought of "I want to be the object of longing for a person who suffers from the acceptance of disease." Thank you for your valuable story.