Skip to main content

Welcome NOAH readers!

The National Organization for Albinism and Hypopigmentation (NOAH) has picked up this blog in the blogs section of their Web site. I was very pleased and honored that they asked. I must, however, warn any new readers that, while I’m thrilled that anyone would want to read this blog, my intended audience is the HPS community. HPS is a type of albinism, and thus many of the issues I encounter in life are the same as anyone else with albinism. Because HPS involves other health issues, however, sometimes this blog gets pretty frank about topics that not everyone would talk about in polite conversation.

Non-HPS’ers might be a bit rattled by some entries.

And sometimes entries have nothing to do with albinism, HPS or health. Grin! This is, after all, my personal blog.

I also want to point out that not everyone with HPS has the same types of health problems that I do. There are eight known types of HPS (and probably other types not yet discovered). I have HPS type 1. You can read more about HPS on the NOAH site, or you can visit the HPS Network, a patient advocacy group just for families impacted by HPS, or a handful of other extremely rare related syndromes. Please feel free to e-mail me with any additional questions regarding HPS at hkdawn@yahoo.com – but please put HPS in the subject line. I get a lot of e-mail, and a LOT of spam!
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

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

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