Skip to main content

For those interested in reading about living with lung disease

Last night Ana sent me the following link. I couldn't get it to work immediately and had decided to put it in my "things to do later" pile. After all, things are quite busy behind the scenes in HPSland right now. I'm unable to even respond to everyone's e-mail right now. But then I called Karen as she's been helping me with a photo issue I'm having with the newsletter.

Karen had seen the link that Ana was trying to share and urged me not to put it in the "things to do later" pile. So, I didn't.

And I'm so glad I didn't!

This MySpace page was created by two young ladies who are suffering with rare lung disease. They've set up this page collecting the stories of people who have rare lung diseases.

It's what I've wanted to do for some time now. I said this early on here on this blog, but it's been a while and thus I suppose I should say it again. I would love to post the stories of other HPS'ers - lung disease or not - so that we can have a growing archive of people's stories. These stories are so useful when we're off speaking in public at medical conferences or trying to generate press interest. And, I think it's so valuable just to record our collective experiences.

So, if you're interested in reading about people with all sorts of rare lung diseases, check out this site: http://www.myspace.com/rare_lung_disease

If you'd like to send me an essay on your experiences living with HPS - either as a patient or a loved one - send it to: hkdawn@yahoo.com.
Labels:

Comments

Post a Comment

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for...
1 comment
Read more

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria...
Post a Comment
Read more

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.
Post a Comment
Read more