Rare Disease Awareness Day
#1
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
To all of you who suffer-you are not alone and the voice is getting louder :-)
Hugs
April
#3
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
Super Member
Join Date: Nov 2008
Location: WHERE THE SUN ALWAYS SHINES
Posts: 9,256
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!
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.
#7
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.
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
Super Member
Join Date: Oct 2010
Location: Arizona
Posts: 4,039
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
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.
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
Super Member
Join Date: Feb 2010
Location: illinois
Posts: 1,169
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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