Skip to main content

Tales from the outreach trail

On the last day of the CHEST meeting, before leaving for the airport, the HPS crew had one last stop to make. When I know we’re going to be in a particular area, I try to get census bureau data about the Puerto Rican population in that area, map it out, and then reference that against area hospitals and clinics to find the “medical” points of contact most likely to see a patient with HPS.

I had found a clinic that catered to a mostly Puerto Rican population in the Philadelphia area. Donna contacted them and they were very gracious. It was arranged that on their way to the airport the HPS team would stop by with lunch for the doctors and do a presentation on HPS.

Easier said than done. Picture this.

That morning before leaving the hotel Donna went to a deli around the corner and ordered food for 22 doctors plus several bottles of soda. She then carried all this food back to the hotel where Ashley and Dr. Guichico from the NIH were waiting. If you’ve never traveled with an HPS’er with lots of medical needs, it can be an eye opening experience. I typically have an entire suitcase devoted to nothing but my medical supplies. Ashley has even more stuff to carry with her. And, Dr. Gochuico had her scientific poster from the poster session.

So, into a taxi the trio went with six suitcases, lunch for 22 and the poster.

When they arrived, the taxi driver advised as the suitcases were unloaded, “Get into the building quickly. This isn’t a good area.” Nothing like a warning from a taxi driver to put a little fear into you.

But as the taxi drove away, the trio discovered they were at the wrong address. Some very nice older ladies standing on the corner advised them that the clinic had recently moved and pointed to a new building more than a block away, uphill.

So, to the clinic the trio trekked, suitcases, posters, Ashley and her cane, several bottles of Coke and food in tow – oh if only I’d been there with my camera! What a sight it must have been!

The good news was the visit to the clinic was well worth the trip. One of the doctors knew he had a patient with HPS, and several of the others had patients they were going to refer for testing. And, the clinic was very interested in becoming a resource center for the Philadelphia area for patients with HPS.

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

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