From Heather Kirkwood of the Hermansky-Pudlak Syndrome Network:
I think everyone I know of in the Seattle area already knows about this - but just in case we’ve got someone out there I don’t know about - here’s a link to the info about the screening of RARE Monday night. We’re really excited about this!
Please everyone, pass this around to your Seattle friends. Thanks in advance!
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transparrotfish:
[Image description: Background is 8 piece pie style color split with black and blue alternating. Foreground is a photo of a parrotfish. Top text reads “(Don’t Give Up)”. Bottom text reads “(You Are Someone Else’s Hope & Inspiration)”. End description.]
As well-intentioned as this argument is, I fucking loathe it.
If someone is about to give up on something, be it life or anything, the last thing they need is the burden of being someone else’s “hope and inspiration.” They need a little hope and inspiration themselves!
This! ^ I’m both trans and disabled. While I’m completely comfortable with my gender and don’t care that my gender presentation doesn’t match my actual gender, I am anything but comfortable with living with so many disabilities and health issues. I’m active in a community for people with one of my conditions, Hermansky-Pudlak syndrome, which for most people with this condition is deadly, and I’ve come up against this social imperative that some in the community subscribe to about “fighting”, “being a fighter”, and “never giving up”, all comments well-meaning, but often very unsupportive of the person facing their last moments on earth. Fortunately, I got many positive responses from people in the community when I wrote about my feelings on the subject and what I’d already decided long ago. When my lungs get so bad that I have to be on oxygen all the time and can’t do much, I’ll find a way to die (with a physician’s help, according to Washington State law), rather than fight to the bitter end. I don’t like this denial of the inevitability of death and insistance on living as long as possible, so I’m extremely grateful for the support I’ve gotten.
If anyone feels that they can’t live for themselves anymore, no one should insist that they have some kind of obligation to be someone else’s inspiration, regardless of the underlying issues. Nobody should be asked to live a life that is meaningless and constantly painful, just for the sake of another. Now, if a person decides on their own, that they want to live for another, that’s a completely different thing. I’ve decided on my own to live for my friends, family, and caregivers, for now, since life isn’t completely unbearable at all times, though it’s getting harder to do, year by year. Eventually, I will have to have conversations with each of them in which I try to obtain either support or forgiveness for not sticking around, and I hope if they try to talk me out of it, they won’t use the selfish “please live for me”-appeal, but instead just ask questions the answers to which will give them enough comfort to be able to let me go. E.g.: Q “Is your condition curable?”, A “No.”; or Q “Can anything be done about the pain?”, A “No.”; etc., etc., etc..](http://25.media.tumblr.com/tumblr_m3et21wpYp1qkevm9o1_500.jpg)
[Image description: Background is 8 piece pie style color split with black and blue alternating. Foreground is a photo of a parrotfish. Top text reads “(Don’t Give Up)”. Bottom text reads “(You Are Someone Else’s Hope & Inspiration)”. End description.]
As well-intentioned as this argument is, I fucking loathe it.
If someone is about to give up on something, be it life or anything, the last thing they need is the burden of being someone else’s “hope and inspiration.” They need a little hope and inspiration themselves!
This! ^ I’m both trans and disabled. While I’m completely comfortable with my gender and don’t care that my gender presentation doesn’t match my actual gender, I am anything but comfortable with living with so many disabilities and health issues. I’m active in a community for people with one of my conditions, Hermansky-Pudlak syndrome, which for most people with this condition is deadly, and I’ve come up against this social imperative that some in the community subscribe to about “fighting”, “being a fighter”, and “never giving up”, all comments well-meaning, but often very unsupportive of the person facing their last moments on earth. Fortunately, I got many positive responses from people in the community when I wrote about my feelings on the subject and what I’d already decided long ago. When my lungs get so bad that I have to be on oxygen all the time and can’t do much, I’ll find a way to die (with a physician’s help, according to Washington State law), rather than fight to the bitter end. I don’t like this denial of the inevitability of death and insistance on living as long as possible, so I’m extremely grateful for the support I’ve gotten.
If anyone feels that they can’t live for themselves anymore, no one should insist that they have some kind of obligation to be someone else’s inspiration, regardless of the underlying issues. Nobody should be asked to live a life that is meaningless and constantly painful, just for the sake of another. Now, if a person decides on their own, that they want to live for another, that’s a completely different thing. I’ve decided on my own to live for my friends, family, and caregivers, for now, since life isn’t completely unbearable at all times, though it’s getting harder to do, year by year. Eventually, I will have to have conversations with each of them in which I try to obtain either support or forgiveness for not sticking around, and I hope if they try to talk me out of it, they won’t use the selfish “please live for me”-appeal, but instead just ask questions the answers to which will give them enough comfort to be able to let me go. E.g.: Q “Is your condition curable?”, A “No.”; or Q “Can anything be done about the pain?”, A “No.”; etc., etc., etc..
Today, February 29, 2012 is Rare Disease Day, cosponsored by EURORDIS (Rare Diseases Europe) and the U.S. organization NORD (the National Organization for Rare Disorders).
So I thought I’d take this opportunity to bring people’s attention to the documentary RARE that follows two people with the rare disease Hermansky-Pudlak syndrome (HPS) as they enter a phase III drug trial for a medicine that is thought to help slow the progress of pulmonary fibrosis. HPS is thought to be as rare as one in a million, but it could be slightly more common, say one in three-to-four-hundred-thousand. But the pulmonary fibrosis associated with HPS shares most characteristics with a much more common condition idiopathic pulmonary fibrosis, so the drug being tested in the documentary is one that had been found to help with IPF. Unfortunately, even though the drug is generally considered about as safe as any other drug, the FDA still hasn’t approved it, despite the fact that it has been approved in Europe.
The reason all this is important to me is that I have this condition myself and so does my sister, and we happen to have a form (HPS-1) that involves pulmonary fibrosis. So it’s pretty important to me that they find a cure as soon as possible since death by pf is one of the least pleasant ways to go. D:
[ … ] most people with albinism don’t have HPS. It’s sometimes hard for us to reconcile these very different perspectives on living with albinism (yes, those of us with HPS ALL HAVE ALBINISM – but not everyone with albinism has HPS.) We are not as rare as everyone once thought. Our numbers grow every day with better diagnosis.
Even on this blog, I am sometimes of two minds about how much to share and what to write. On the one hand, I want the world to know what it’s like living with HPS. I want people to know and understand what we go through, and to understand why we need their help. On the other hand, I worry about the new person that stumbles across this blog. I worry about the person who might be so afraid if I really expressed everything happening in my world that they’d be afraid to seek testing or to find out what to do to best care for themselves. After all, not only does not everyone with albinism have HPS, but there are different types of HPS, and not all of them are as bad as others.
[ … ]
We, the Hermansky-Pudlak Syndrome community need your help! We need to find better treatments, and someday, a cure.
We need the greater albinism community (and the pulmonary fibrosis community) around the world to try to understand us, and to help us. We are people with albinism too. We are people with pulmonary fibrosis too. We are among you all over the world. Getting an accurate diagnosis isn’t a cure, but it can prevent unnecessary problems and it can help those affected maximize what is available to help.
