Skip to main content

Squash the stigma

The following article ran on the ABC News site. I encourage you to click through. The first part is about Rick and his photography, but it also talks about the upcoming NOAH meeting and efforts underway to help the people with albinism in Africa. That's something I'd like to help with if at all possible.

Having HPS makes albinism much more than a matter of vision or appearance for me - but I can't imagine being hunted down like an animal for your body parts. I can't even get my head around it.

I was pleased, however, to at least see a link on the side to the story about HPS that ran on the AP. It would be nice if we got mentioned now and then as a part of the albinism community though and not something "separate." But that's okay. I thought the article was very good.



Fighting the Stigma of Albinism
Stereotypes Prompt a New Push to Empower People Traditionally Known as Albinos
By SUSAN DONALDSON JAMESJuly, 9, 2008
It was at the corner of Park Avenue and 20th Street in New York City that fashion photographer Rick Guidotti first spotted a pale, teenage beauty with snowy hair.

"She had long gorgeous hair and giggled with her friends, and she had zero pigmentation," said Guidotti, who had shot on runways around the world for Revlon, Elle, Marie Claire and St. Laurent.

Despite years of casting and international shoots, by the mid-1990s Guidotti had never worked with a model with albinism.

"I was always told who was beautiful and forced to work within the parameters of beauty -- this model, this season and this face," Guidotti told ABCNEWS.com. "My own ideas of beauty were completely ignored."
Struck by the stranger's unusual but striking features, Guidotti went home and poured through medical journals to learn more about people who've traditionally been called albinos.

"All I kept seeing were pictures of people in underwear, lining against the walls in doctors' offices with black bars across their face," he said. "They were all sad and dreary, images of despair."

Increasingly referred to as "people with albinism," they were once portrayed in circus sideshows as oddities associated with superstition and magical powers.

To read more visit: http://abcnews.go.com/Health/Story?id=5323052&page=1

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.