Living on the frontlines

What thoughts run across your mind when you encounter someone coughing and coughing away in public? The other day I’d stopped at a little hole-in-the-wall restaurant to grab something to eat before grocery shopping. It wasn’t a diet friendly place, but I figured the harm of the extra calories wasn’t as bad as going to the grocery hungry and bringing home things I shoudn’t eat for an entire week.   As I sat down there was only one other family in the restaurant. It seemed to be a set of grandparents, their daughter, and their teenage granddaughter. The grandfather started coughing. It was the kind of cough it almost hurts to even hear. It was a deep cough and sounded as if his insides were rattling. His family was leaping up to get him napkins to cough into. Every time he tried to take a full breath, the coughing would start again.  My first thought was to reach for my hand sanitizer. We had been at the counter ordering at the same time. The last thing I need is some sort o...

A comprehensive medical paper on the care of patients with Hermansky-Pudlak Syndrome throughout life was published in the July, 2013 issue of Pediatrics, the journal of the American Academy of Pediatrics. The paper was authored by Dr. Samuel Seward, Assistant Vice President and Medical Director at Columbia University and Dr. William Gahl, Clinical Director for the National Human Genome Research Institute at the National Institutes of Health. The paper explains HPS and outlines the health care needs of those affected by HPS from early childhood to adulthood. It will be a useful reference paper for doctors new to HPS. If you would like a copy to share with your physician, contact the HPS Network at: 1 (800) 789-9HPS or e-mail: info@hpsnetwork.org. 

It's that time of year again. The summer is almost over and it's almost time to start back to school.  I was a kid with HPS so long ago. (And, I didn't know I had HPS when I was a kid - scary thought!) I"m sure a lot has changed.  One thing I'm sure hasn't changed is the need to make sure things are ready to go at the start of the school year. And, if they're not, that someone is working on the issue.  One problem I always had was getting my large print or tape text books ON TIME! I don't think that ever happened, even once, after about fifth grade. I'd spend weeks suffering away with regular sized fonts and much eye strain.  Now, with technology so much a part of education, I suspect parents also need to make sure the appropriate technology is in place to participate, read the board etc.  Fran Moore is a board member of the HPS Network. She will be on the Aug. 13th English-speaking HPS Parent call. It's a great chance for parents to t...

I’ve just returned from two wonderful weeks visiting my dad and stepmom in Idaho. They’ve retired in a small resort community and bought a house with a lake view that seems to hold a strange attraction for yellow jackets. I’m not kidding. My dad has turned into a kind of yellow jacket John Wayne. He makes the nightly rounds with two cans of bug spray like side pistols trying to get rid of all the nests. If some unfortunate yellow jacket should happen to fly out, he’s after them and, perhaps because of his pilot background, describes the encounter like a fighter pilot describing a dog fight. It’s pretty entertaining actually, as long as I’m nowhere nearby during the spraying. Grin! It sounds like a strange thing to say, but honestly, I was a little afraid of going on a true vacation. I haven’t had one in years and years. Yes, I stayed with my mom for a month a bit more than a year ago. Yet, because I was gone so long, I had to find ways to work on the trip. The same is true when I ...

Today we added two new HPSers to the patient registry. This puts us at 81 to go on this year's Hundred People Search! 

We added another person yesterday. This puts us at 83 for the Hundred People Search.