SEPN1 | mydystrophia

Some German Inspiration

I have not updated this blog in a long time. Life just got very busy! But here I am again - still very much alive and kicking. The reason...

Losing a best friend

Five years ago this week, on May 16, 2011, I stood outside my rented row home and watched as my best friend left with his new family for...

Just a door.

Take a look at this picture. What do you see? A door, right? Just a door. Behind this door are our condo mailboxes. I need to go through...

Circles

I would like to be a ghost. I do not want to die you see. I love life. I like myself. I don't want to leave yet. But I would like to be...

Dystopia: an imagined place or state in which everything is unpleasant or bad.
Dystrophia: a real place or state of muscular dystrophy in which everything is ...

I am 46 years old living in the United States and this is my journey and my experiences of living with a rare congenital muscular dystrophy known as SEPN1-RSMD.

My Dystrophia

My journey with rigid-spine congenital muscular dystrophy (SEPN1)

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