Skip to main content

Still here...yawn

Nope – I haven’t disappeared. Nothing’s wrong. I’ve just been super tired. So stinking tired! I’m so stinking tired of being tired. But, as I haven’t posted anything here in days (as if anyone is reading this anyway) I thought I might surface long enough to announce all is okay with the world. The thought occurred to me that this might be a good idea after sharing with the very first person, a fellow HPS friend, that I was toying with this blog.

“What do you think of the idea?” I asked after a lengthy explanation about my ill-defined goals, purpose and concerns that this would become a Hermansky-Pudlak Syndrome whine fest. “I think it’s a great idea!” she so nicely replied. She then told me of a Web site she’d found shortly after her diagnosis that a man with pulmonary fibrosis had created. He was trying for a lung transplant and was using the Web site to tell his story. “Only thing is,” she explained, “The posts just stopped. It was kind of depressing. He probably died.”

So, lest anyone be worried that amongst all my whining something has truly gone wrong – nothing of the sort. Yes, I’m having some health issues, but they’re minor, annoying, and taking a back seat to the fact that our magazine needs to go to press at work.

Comments

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...

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...

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.