Living on the frontlines

We've added another new patient to the HPS patient registry. This puts us at 46 to go on this year's Hundred People Search! Great job! 

This past week we added seven new HPSers to the patient registry. This now puts us at 47 to go. Keep up all the great outreach everyone! (We also have 11 new people trained on Presentation in a Bag - excited to hear about your outreach efforts.) 

This morning we have big news on the Hundred People Search. This week we added 20 new HPSers to the patient registry. They were people from the Puerto Rico trip. There may still be a few more as we are still processing a few. Sometimes people we think are new are only people who have moved and with whom we've lost contact. We check to be sure they aren't registered with different contact info. This now puts us at 54 to go on the Hundred People Search! 

It's probably one of the most common questions people with albinism get. The trouble is, how would you (if you're a person with normal vision) describe how you see? I have nothing to compare with to explain my vision. Once, I was told that our lack of being able to see detail was like looking at the world through a 1950s TV (without the black and white). People with normal vision have the latest and greatest high definition TVs. It sort of makes sense.  Parents often comment about how amazed they are that their child saw one thing, but not another. I can't explain it except to say there are tricks of the trade that you just learn over time. For example, if something drops (like a toy) I might hear it, and thus know where to look. It might appear I saw it when I didn't. I've been known to find booboos in knitting and cross stitch that surprise people. The trick, I always look for patterns. I do it and I don't even realize it. I might not be able to see the smal...

I was overjoyed to read yesterday about the 10 th HPS lung transplant I am aware of, and even better, it was a success. It was reported in the Deccan Chronicle in India. Of course, when we talk about number of transplants done, we can only report the ones we know about. How easily we might not have known about this one.  Having a registry and staying in touch with the Network to share this sort of information is so important! Every successful HPS transplant will make it easier for all the other HPSers eagerly waiting for their new lungs. I am hoping that somehow, some way, we will be able to track down this patient and talk to him about his life.  I want to know how he does with the new lungs. I want to know if he ever took Pirfenidone since it is available in India. I want him to know there are more than a thousand of us out here who would like to be his personal cheerleaders. You can read the article at: http://www.deccanchronicle.com/130909/news-current-affairs/ar...

We added a new person to the HPS patient registry today. This puts us at 74 to go on this year's Hundred People Search. 

We all have certain expectations in life, and with many expectations comes trepidation. For those of us living with HPS types 1, 2  and 4, pulmonary fibrosis is an expectation in our lives. We know it is coming, most likely before we’ve reached a ripe old age. Pulmonary Fibrosis is an ultimately fatal disease. The age of onset varies widely, even among siblings. We live never knowing when this will present its self, or if anything we are doing might be a contributing factor. It’s what makes HPS pulmonary fibrosis different from other types. It’s not just a genetic pre-disposition. It’s a fact – sooner or later. Recently the HPS Network conducted a survey of people with HPS as part of a grant application. Researchers wanted patient feedback. Besides the obvious, the cure, what do those with HPS want researchers to focus on most? What most greatly impacts their quality of life? Perhaps unique to HPSers with pulmonary fibrosis, it is the certainty of one day developing ...

Ivette Vasquez, President of the HPS Network Puerto Rico, was joined by 14 other HPSers and family on the television program Entre Nosotras on WAPA TV 4 in San Juan. The group spoke about Hermansky-Pudlak Syndrome and the Eighth Annual HPS Puerto Rico Conference. A special hit with the interviewer was little Daneishka m Gonzalez Rodriguez. She sat on the host’s lap for almost the entire interview and was an awesome ambassador for HPS!