Living on the frontlines

On Saturday, the ATS holds an afternoon event for patients with lung disease. This year Demetria and her husband Russel were able to join us too! It was so cool to have more HPS patients there. Next year ATS is in Phillly, so we should have a good turnout! 

I'm passing this along from the American Foundation for the Blind - Current and Past College Students with Vision Loss Needed The American Foundation for the Blind's CareerConnect staff are doing a survey of of current or past college students who are blind or visually impaired specific to their college experience. AFB is looking for participants to take this short ten question informal survey. The information will be compiled and utilized for presentations, and to help prepare future college students with vision loss. http://www.afb.org/community.aspx?AnnouncementID=1280

The National Institutes of Health is interested in seeing HPS'ers with a gene type that does not cause lung disease. (This would be type 3, 5, 6, 7, or 8.......) They are interested in performing lung lavages on HPS'ers that are not at risk for lung disease in order to collect fluid for the lungs (BAL fluid) to be used to compare to that of HPS'ers that have gene types that do cause lung disease.  They have noticed that the BAL fluid of HPS'ers that have genes that cause lung disease has differences from that of control groups. They need to determine whether those differences are part of HPS in general, or whether they are unique to HPS'ers that will develop lung disease.  A lung lavage involves putting a tube down your throat and into your lungs, flushing liquid into the lungs, and then sucking up the fluid after you cough. It sounds horrible, but I've had it done several times and it's not that bad. They give you wonderful drugs! While you do have to b...

I'll post a full story about this later. I've been a bit under the weather since I got home. I thought it was allergies, but now, I think it's something more. I'm debating about whether to go to the doc or not. I know, I know, I should got, but now it's been days and I keep thinking surely we're coming to the end of this crud! It needs to get better quick though! I'm back out on the road very shortly!  In the meantime, let the picture parade begin! (You all know how I am about my camera!)  As you see from the video below, the girls got creative while we were waiting for the booth to open. The ATS Center was located across from our booth. One of the guys in the booth put on some sunglasses and started dancing as they were practicing, so we headed over to give him a performance! These pics are the girls singing to the ATS booth staff, and Donna dancing! I got off easy - I had the camera! The power of the camera! 

Anthony Creer, husband of HPS’er Janet Perez, gave a presentation about Hermansky-Pudlak Syndrome to a district meeting of Latin American Lions Clubs from Orlando, Davenport, Kissimmee and Osceola, Florida. Creer is a member of the Osceola Lions Club that sponsored the meeting. Creer shared information about HPS, about his wife Janet’s experiences as an HPS’er and lung transplant recipient, and about what the Network does to support those with HPS. The presentation yielded an invitation to speak to medical students in the future.

For the first time, a special session was planned at the 2012 conference to allow those with the digestive complications of HPS to meet and get to know one another. The session was not scientific (although bowel issues were addressed during the science sessions on Sunday). “This was a session that was suggested by one of our members,” says Heather Kirkwood, HPS Network VP and member of the conference planning committee, “He pointed out that at conference, it’s sometimes hard to tell who else experiences the bowel complications of HPS so that you can share experiences. After all, it isn’t always the sort of thing you talk about with just anyone.” Approximately 20 HPS’ers and family members attended the session. They shared stories and experiences, as well as discussed ways to help advocate for more research into the bowel complications of HPS. It was decided that attendees with bowel disease would be asked to stand up at the same time during the science session to visually show how...

It looks like the Boston Hermansky-Pudlak Syndrome picnic was a hit!