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June 2009 - Posts
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Last week I blogged about some of the interesting papers I’d found on my latest troll through the medical papers (the ones I can get to anyway).
One thing I left out, mostly because it didn’t fit with the topic at hand, were the papers I found where the researchers are studying HPS, but not so much for HPS’s sake. Several of the researchers were using the protein trafficking problem of HPS as a model to study cancer cells that don’t respond to typical cancer therapies. The science, as usual, was a bit beyond my humble understanding. I suppose the researchers are trying to better understand why certain types of cancer are resistant to therapy.
There were several of these papers. In fact, last year a researcher from Germany studying cancer contacted the Network and asked if we could help him get some blood samples. After his research was looked at by some of our science folks, I volunteered some of my blood. If you could help a cancer researcher with a vile of blood, how could you refuse?
And who knows – even though they aren’t studying HPS exactly, as they work with their HPS mice etc, perhaps they’ll stumble upon another clue for the great mystery.
I bring this up for another reason too, however. There are those who don’t see the value in funding research on a rare disease like ours. They’d rather go after the big name diseases that they feel impact more people. The thing is, however, there are many times in history where studying a rare disease has yielded that magic clue to an ailment much more common. By ignoring disorders like ours, they could be overlooking that critical clue that could make all the difference.
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Two weeks ago now Donna and I attended the public information meeting for the National Heart, Lung and Blood Institute. It was the first time I’d attended this meeting and Donna was showing me the ropes.
It was two days packed full of information, but several things stood out in my mind that I’ll share here.
The first day the official meeting didn’t start until evening, however, the lung disease groups got together for about six hours beforehand to discuss issues of mutual interest. This might not be a fair conclusion, but I have the impression the lung disease patient advocacy groups work together far more closely and in an organized manner than patient advocacy groups in other parts of medicine. I think this might partly be because of the power in unification they’ve found as part of the public advisory roundtable of the American Thoracic Society. ATS deserves a lot of kudos for being so open to patient advocacy involvement in what otherwise is a closed club of doctors and researchers. It has benefited the patient groups greatly, and I think ATS as well.
At this meeting we heard from one of the lobbyists that works on behalf of the ATS on Capitol Hill. It was very interesting to hear what she had to say about the health care reform efforts. Essentially, the challenge is that even though this reform is supposed to make its way through the system this summer, there seems to be an amazing lack of detail on the part of anyone’s plan. That is especially concerning to me and makes it impossible for me (personally and not as part of the Network) to make a decision about which plan would be best.
One of the planks of one of the plans refers to setting up a health care safety net for the “disabled and chronically ill elderly.” What does that mean? Who decides who is disabled? If you’re chronically ill but not elderly does that make you disabled? So many questions that remain unanswered – it’s hard to know what to support.
Personally, I am convinced both that we need a public or government component to whatever is decided. At the same time, I also think industry can and should play a role.
While my politics run left of center (at least in Kansas anyway), my dad is a conservative through and through. We have friendly arguments all the time. He doesn’t trust the government to manage anything well, and I can’t say that this opinion isn’t based on some well-founded concerns. On the other hand, industry has done a poor job of managing patients like me thus far. The reality is I’m never going to be profitable for an insurance company. It bothers me that the people responsible for my care as someone with a chronic illness have a profit motive to not give me the best possible care. That’s a problem. But I’m not the average 36-year-old either and the average healthy 36-year-old can likely find their health care needs adequately met in the private sector.
There just isn’t going to be a one-size-fits-all solution to all of this.
I have some other observations from the meetings, but I want to post them separately.
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 Congrads to Dr. Guttentag. Here we are posing for a pic with Dr. Guttentag on the far left, then Carmen, me, Donna and Dr. Gochuico. The American Thoracic Society is divided up into different assemblies, each one focused on a particular area. For example, one might focus on sleep, while another on COPD. Our docs belong to the assembly for MDs and PhDs - the bench researchers doing basic science related to lung disease. Our own Dr. Guttentag was elected as Chair of the committee charged with reviewing suggestions for various symposiums at the next meeting. We were so thrilled for her!
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This is just a brief health update. Some of you might have noticed I haven’t blogged as much lately – pics are easier to post. This past week I’ve felt so drained. I can’t seem to sleep enough. It’s as though I force myself through the day getting done what needs to be done.
When I run errands the heat and the humidity feel as though someone is putting a heavy blanket over my face making it hard to breathe.
I’ve been doing a lot of cleaning, and I feel like I’m even more sensitive to things than I used to be. Cleaning takes forever because I have to stop so often and take a break. We don’t even want to talk about the jungle growing on my patio. Groan – if I wanted to take care of a yard I wouldn’t be living in an apartment. I really wish the landlord would care for that stuff. All I wanted was a place for a few flower pots that would look cute and I could water every other day.
I’ve also had a number of code browns. I suspect part of that is to do with how much sweating I do whenever I go out. I also, however, have a new little bleeding spot under my stoma. It had cleared up, but it’s back. I’m getting rather paranoid about ever getting too far from home or a safe place for ostomy care. My upcoming trip to Boston could get interesting. I’d better case out the convention center now.
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 Here's Janet, beating the sun with one of those HPS unbrellas.
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 More of our float folks!
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 Note the unbrellas, also for sale from the Network - grin! Thanks so much to all of these folks that came out to support us in the effort to get the word out! They have no idea what a difference they're making the lives of hundreds of HPS'ers, and hundreds more to come! Way to go!!!
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 Awe, Janet and Anthony, who is this little person with the beautiful eyes? (Parade photos by Anthony)
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 Close up of the signage on the float!
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 Here Janet is posing with some of our supporters (Janet, you'll have to tell me who these people are!) They're also sporting lovely HPS Network T-shirts - did I mention you can buy those from the HPS Network? Grin! (photo by Anthony, Janet's husband and
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