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Thread: Rare Disease Awareness Day

  1. #1
    Super Member LovingIzabella's Avatar
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    is February 28th. I know many people on this board are afflicted with medical issues or know someone who is. I myself fight with a disease that has no known cause or cure and is still considered "rare". I hope with an actual awareness day all of the people who suffer can finally start getting the awareness deserved and solutions being found.
    To all of you who suffer-you are not alone and the voice is getting louder :-)
    Hugs
    April

  2. #2
    Super Member Candace's Avatar
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    I also have a very rare, incurable disorder. We are very "special" people:>

  3. #3
    Super Member Izaquilter's Avatar
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    Yes I have Idiopathic Pulmonary Artrial Disease, no known cause & no cure. Makes life miserable for the most part. Idiopathic means no known cause, pulmonary is to do with heart/lungs, arterial is the veins leading from my heart & lungs. BUT I have been put on a new medication & am finding some relief there. I would just like to tell people that when a person is handicapped, we don't like to be stared at like we are aliens. We didn't want this. I would give anything to park in the farthest parking space from the door. I don't look handicapped & I get looks from un-understanding people UNTIL I put on my oxygen hose. I breathe heavier than the normal person just sitting there & that's because my lungs are restricted. I'm getting over weight because I cannot exercise. So until you wear a person shoes, please don't judge them!

  4. #4
    Power Poster dreamer2009's Avatar
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    Quote Originally Posted by Izaquilter
    Yes I have Idiopathic Pulmonary Artrial Disease, no known cause & no cure. Makes life miserable for the most part. Idiopathic means no known cause, pulmonary is to do with heart/lungs, arterial is the veins leading from my heart & lungs. BUT I have been put on a new medication & am finding some relief there. I would just like to tell people that when a person is handicapped, we don't like to be stared at like we are aliens. We didn't want this. I would give anything to park in the farthest parking space from the door. I don't look handicapped & I get looks from un-understanding people UNTIL I put on my oxygen hose. I breathe heavier than the normal person just sitting there & that's because my lungs are restricted. I'm getting over weight because I cannot exercise. So until you wear a person shoes, please don't judge them!
    Curious...have you ever seen a chiropractor that uses applied kineisiology(sp)
    after my accident had hard time breathing and moving lungs. rib cage very restricted. she has done wonders in that she actually gets the ribs to free up so the lungs can breathe easier...something to think about.

  5. #5
    bkb
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    I am a private duty nurse to a child with a rare disorder. The child is very dear to me , it will be hard when she goes to her heavenly home.

  6. #6
    Super Member Carrie Jo's Avatar
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    I have a rare autoimmune disease.. no cure. And sometimes I feel like hell and look the same. But I will not let it get me down..

  7. #7
    Super Member purplemem's Avatar
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    I survived over 30 pulmonary emoblisms and a saddle embolism. I have restricted activity, but look like everyone else. I struggle to breathe all the time. Not a rare disease, but a disabling disorder.

    My nephew has Mobeus Syndrome. This involves facial paralysis, sometimes known as the "kid without a smile." His sister was born with only a big toe on one foot.

    Our family has multiple health issues. My heart and prayers are with you all.

  8. #8
    Super Member suebee's Avatar
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    Quote Originally Posted by Izaquilter
    Yes I have Idiopathic Pulmonary Artrial Disease, no known cause & no cure. Makes life miserable for the most part. Idiopathic means no known cause, pulmonary is to do with heart/lungs, arterial is the veins leading from my heart & lungs. BUT I have been put on a new medication & am finding some relief there. I would just like to tell people that when a person is handicapped, we don't like to be stared at like we are aliens. We didn't want this. I would give anything to park in the farthest parking space from the door. I don't look handicapped & I get looks from un-understanding people UNTIL I put on my oxygen hose. I breathe heavier than the normal person just sitting there & that's because my lungs are restricted. I'm getting over weight because I cannot exercise. So until you wear a person shoes, please don't judge them!

    WELL SAID!!! :):):)

  9. #9
    cjr
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    Super Member cjr's Avatar
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    Thank you LovingIsabella for starting this thread. For what it is worth, I think as people age they become more tollerant of others with invisible handicaps.

    IT REALLY BUGS ME TO SEE SOMEONE PARK IN HANDICAP AREA WITHOUT TAGS ON CAR. So far have not needed handicap area, but some day I may.

  10. #10
    bkb
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    my youngest child had severe asthma when he was little started when he was8 months old . He cannot run when in school would get in trouble in Pe. teachers thought he was playing around.he told one of them. dissect me look at my lungs see the scars? that is not playin around!

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