Whazup with the video?

I came across this video clip on YouTube. Ben Morrison is a comedian that has Crohn's. The GI issues of Hermansky-Pudlak Syndrome have been on my mind a lot lately. We've had a bit of a GI epidemic lately. Currently we've got Sheena about to have surgery, Karen about to have a scope, Matt recovering and hopefully returning to his internship, and Katy's ongoing problems - just to name a few! Trust me - there are more out there. HPS does involve a Crohn's-like element for about 20 percent of us.

Keeping your sense of humor is incredibly important to being able to live with a chronic illness. I have to admit, sometimes I'm not feeling very ha, ha - but stuff like this helps. I know there are some of you who would choose a few different words here and there - but I liked this!

Comments

Kathryn said…

Thanks for the video. It's been a discouraging day, working with the doctors and some people with NIH. Maybe I'll email you about it, if I feel like talking about it. I'm just tired of everyone with a degree thinking it's in my head and suggesting I need to see a neurologist.

3:52 PM

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

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.

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

Living on the frontlines

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