“Self-Introduction” The current position of a person with Duchenne muscular dystrophy. Why I connect with society through an NPO.
Nice to meet you. Thank you for finding my page among the many articles out there. Starting today, I am beginning my journey of sharing on note.
“Living life as myself, even with a rare disease like muscular dystrophy.” I intend to write here about my daily life, my activities, and the “wisdom and regrets” I have gained throughout my life so far.
1. The disease called muscular dystrophy (Duchenne type)
I was born with a rare disease called “Duchenne muscular dystrophy (DMD).” To explain it very simply, it is a progressive disease where the muscles throughout the body gradually weaken due to a lack of the protein that builds muscle.
The lungs used for breathing weaken, and since the heart is also a muscle, its function gradually declines as well. There are also complications.
2. The reality of living alone with “24-hour helpers”
Currently, I use a system called “Comprehensive Support for Persons with Disabilities,” andI live alone while having helpers come in shifts 24 hours a dayI left the hospital at 18 to start living in the community, so it has already been 14 years (laughs).
I usually spend a lot of time on my computer at home, but I also receive regular home-visit rehabilitation and home-visit bathing services, so I never neglect body maintenance.
“Is it possible to live alone away from your parents even if you have a severe disability?” I have often been asked this. In reality, it depends on the region, but I hope to talk about my experience eventually.
3. Activities at the NPO “SevenSeas” and an unforgettable day
Alongside my own life, as the vice-director of the NPO “SevenSeas,” I am also pouring my all into support activities for people with the same disease or
other rare diseases.
Here is the organization's URL
Seven Seas – Everyone's future and potential are as vast as the seven seas #UnlockYourPotential
A particularly major milestone was September 7th of last year.
This day was the international anniversary known as“World Duchenne Awareness Day.”On this day, with the cooperation of specialists, pharmaceutical company staff, and many people living with the condition, we held a large-scale event.
I strongly felt that I want to pass on the passion of that day, where we discussed the “future of the disease” across all positions, to even more people.
4. My hobbies are “soccer” and “live concerts”!
It gets a bit stiff if I only talk about the disease, so I also enjoy my hobbies to the fullest.
Watching soccer: I love the excitement of the stadium.
Music concerts: The vibration and sense of unity at the venue are my greatest source of energy.
I want to share the “excitement” found in the outside world from now on.
But basically, I like being at home the best.
If there is nothing going on, it is a hassle to go out (laughs).
5. Parents' anxiety, children's independence
In my case, when I started living alone, I talked with my parents many times, and sometimes we clashed intensely. What I realized there is thatthe nature of the worries held by the “individual” and the “parents” are fundamentally differentI will talk about those details eventually.
6. Why I moved from Ameblo to “note”
I used to write a diary on Ameblo, but having reached a turning point in my life at 32,
I started thinking I wanted to improve the 'quality of information sharing'.
Things that have truly been helpful while living with this disease.
To be honest, things I still regret and think, 'I wish I had done that differently.'
The differences in what parents and children worry about (the misunderstandings that arise from different perspectives).
And the future vision that we (SevenSeas) are painting.
I chose note to deliver these in a more readable and organized format. Nothing would make me happier than if this article could provide some hints to those who are struggling just like I was in the past, or to their families.
If you resonate with this, I would be happy if you could support me by clicking 'Like' or following!
I look forward to connecting with you all from here on out.
Thank you for your support.