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|I write about my diseases and disabilities (Charcot-Marie-tooth disease
and Chronic kidney failure). I write this as minutely as possible.,but
People who aren't interested in this substance may fell dull. However,
I think people who have the same disease or disability wamt tp know about
what the symptoms and lthe ife. more than a little.
THE CHARCOT-MARIE-TOOTH DISEASE
CHRONIC KIDNY FAILURE
|I was diagnosed as Charcot-Marie-Tooth disease when I was fifth-graders.
My mother took notice of my disorder first, the disorder was strange my
step. It is called a heavy clubfoot. Now I come to think of it, I feel
like I had symptoms earlier. Because I ofen tumbled, I became skin and
bones, I had a high instep and my toe bended.
I live in Kanagawa, but I lived in Sapporo by my father's work at that
time. For that reason, I was diagnosed fromHokkaido University Hospital. I'd better underwent surgery at that time, but it was certain that we
go back to Kanagawa after graduation from elementary school Therefore the
operation was postponed. I spended with assiistive device all the time.
I wasn't insensible of the symptom of weakening of muscles because I often
climbed mountains with my farther.
I entered a local junior high school after going back to Kanagawa.,and
I was admitted to the Kanagawa Children's Medical Centerin Yokohama in May in that year (1988). I underwent surgery to rebuild
of bony deformity after several tests in July. I underwent it severally
light and left, it's a right foot at thet time. The operation of left foot
is in October. After that, I did rehabilitation and left this hospital
in the next year (1989).
I studied at the school for disabled children in this hospital. The lessons
of that school had interesting class which the general school don't have.
We use personal cpmputers that didn't prevail at that time, make potteries
and so on. I was really fun. I don't undergo treatment and test for Charcot-Marie-Tooth
disease from when I left here to today.
I can go to local school after discharge from this hospital. And the same
year (1989), I was found urinary abnormality by the urinary test in school
when I was second-year junior high school student. I had to go to the Kanagawa Children's Medical Center for the kidey next time. I entered this hospital and underwent a test
of kidney biopsy the same year. This is tha test which inspect the condition
of kiddney by injecting into the back and taking tissue of kidney. I was
diagnosed as chronic nephritis nephrotic syndrome. I spent my life without the special food restriction except the salt
restriction. Just the, I couldn't exercise excessively.becuse it require
the kidney to work harder. Taking of the restriction, just like that, I
also could go to high school.
Time went on, I entered the hospital again for kidney biopsy when I was
second year high school student in autumn.. I forgot from what time but
i went to Tokyo Women's Medical University hospital then. I wrote that before, and the kidney biopsy is the test which take
tissue of kidney by injecting into the back. But I was taken it by surgery
because my kidney was already sclerosed, I thought that my kidney became
worse to the chronic kidney failure by the test. I needed to go on a strict diet from here. It was the food
of high-calorie, low-protein and reduced sodium. I put a hard strain on
my mother because I couldn't cook myself.
As far as I know, it takes a lot of time from becoming chronic kidney failure
to needing the dialysis treatment. But I need the dialysis treatment after
３ months from becoming chronic kidney failuer in January next year. I used
to avoid the dialysis treatment for a long time. I was in condition that
I couldn't speak clearly and couldn't walk satisfactorily. People become
the heart failure by rising the potassium concentrations in th blood to
more than 8.0 mEq/L. But it was 7.8 mEq/L and my life was in danger. I
avoided the dialysis treatment against reason but ultimately I had to introduced
dialysis treatment at seventeen in January (1992).
I moved away from the dialysis treatment to the CAPD in January in 2001.
It was three reasons. It doesn't strain the heart. I don't have pain from
with a injection. It reduce food restriction and fluid restriction. But I can't
keep doing CAPD perpetually. Therefore, I have to return to dialysis treatment
but I'm doing it yet as of November in 2006.
About my diseases and disabilities are like this. iI write about approach
to improving the Charcot-Marie-Tooth disease on the "For improving disabilities" page.