Some of the HPSers have been having a conversation lately about the state of research. We are an impatient group. You can’t blame us. We’re watching our friends grow sicker, need lung transplants etc. We have an ever growing younger generation as people get diagnosed earlier and earlier, and we want them to have a future better than ours.
Yet research seems to move so slow. We are all a bit sad that currently there is no clinical trial on the horizon.
Sometimes it’s a matter of perception. When the drug trial was underway HPSers were in and out of the NIH all the time. They would share about their trips and there was a tangible feeling that things were happening.
Now, things are happening, but we don’t hear about them as often. We hear about them at conference for a day. I know (because I’m on the board) that there’s more afoot than even was shared at conference, but was so preliminary, it wasn’t appropriate to share in a public setting with patients. The thing is we don’t see that.
It’s amazing how quickly the excitement of one day of research updates can be overwhelmed by the day to day realities of living with HPS.
I wish I could be a fly on the all in labs working on HPS. I wish I could visit to take a picture of our researchers hard at work. I know they are, but I want to show everyone. I want them to see it in a more real way.
In the meantime, this article was shared with me today. It’s a reminder that not just HPS research moves forward. Research in general moves forward and somewhere out there, will likely yield a discovery that will, one day, help us as well.
Here’s the article. PLEASE keep in mind it’s early going with this idea, and it seems from the article, it’s only intended for emergencies. But imagine, if there was a drug that could put oxygen in our blood without needing our lungs to work at all. Wow!