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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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    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!

  11. #11
    Super Member Izaquilter's Avatar
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    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.

    I had pneumonia, thought it was allergies & it wrapped itself around my lungs. I have scarring around my lungs & it's irreversible. Have had many, many x rays, 2 cardiac caths & it all shows that my lungs are not only restricted but more or less scarred from the pneumonia. So I can only hope the meds they have me on keeps helping at this point. But thanks, I will talk to my sister since she goes to a chiropractor to see what he can tell her. Anything is worth a try at this point,

  12. #12
    Power Poster SulaBug's Avatar
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    I have MS & although there is no cure for it, I feel so blessed for everyday that I can be here & visit will all of the wonderful people on this quilting board!!
    Sew Happy,
    Cheryl
    :D :D :D

  13. #13
    Super Member LovingIzabella's Avatar
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    You are all inspirations to me! This board has been such a "lifeline" for me and I have made some of the most wonderful, most compassionate and most loving friends here.
    Hugs
    April

  14. #14
    Super Member mamaw's Avatar
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    I live with an incurable form of leukemia; and same as Cheryl...I am so thankful to be here to enjoy each and every day.

  15. #15
    Super Member LovingIzabella's Avatar
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    Well here it is rare disease day and mine has knocked me for a loop :-( I am home sick as can be and it stinks!! Hope you all are having as good a day as possible
    Hugs
    April

  16. #16

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    Happy Rare Disease Day to you. I am sorry you are not feeling well. My 13 year old daughter also has IH - and I hate that there seems to be no rhyme or reason to bad pain days. I Hope and pray every day for a cure!
    I especially like the quote under your posts... "Changing IHave to IHad"
    Praying that tomorrow is a better day for you.
    - M

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