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Thread: hi i'm new

  1. #1

    hi i'm new

    i'm new... my name is paxton. i'm a college student in CT.
    i have HSP that closely mimics the presentation of spastic diplegia CP. i have some other health problems as well that aren't related to my spinal cord (eosinophilic GI disorder, elhers danlos syndrome and aspergers syndrome)
    i play sled hockey and try to stay as active as i can... i'm looking into buying a handcycle. i also take karate (i'm a yellow belt). i've done 2 5K road races with my nimbo walker (walking it, not running it)

    i use a manual chair at school and if i'm going out somewhere (quickie GTX) and wear AFOs and use forearm cutches (walkeasy) for short distances.

    no one else in my family that we know of has or had HSP, although my great uncle had ALS, and my uncle has MERRF, which we have been told is possibly connected.
    mitochondrial disease complex 1 deficiency, suspected HSP
    type 3 ehlers danlos syndrome w/ type 1 overlap, g and j tubes
    aspergers & friends
    survivor of 2 TIA strokes

  2. #2
    Welcome to the forum. Sounds like you are very active, that's great!

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