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All Blog Posts
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I was disappointed Sunday to not be feeling very well. I was supposed to go to Lyra’s second birthday party. Lyra is a little girl in my area with albinism. Her family and I have gotten together two years in a row to raise some money for NOAH. She’s such...
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Look out on the runways of Paris! Here I am on the second night of the sleep study. Jackie, the sleep tech, showed Dr. Markello how to make a little "hat" to keep the wires from going everywhere. She also showed us how to make a little "purse"...
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Janet Perez is an HPS'er that lives in the Chicago area. Some of you may know her from the HPS adults listserv. She was diagnosed with Hermansky-Pudlak Syndrome rather late having, unfortunately, never heard of it or it's potential complications...
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I finally managed to sleep several hours with the CPAP mask on. Dr. Markello would be so proud – grin! The only trouble was it was the middle of the day when I did it. Usually I sleep in late on Saturday mornings, typically from complete exhaustion. But...
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I got great news from my blood work on Thursday. The CK came back down to 65. Yippee! I would have been surprised if it hadn’t come down. I honestly think it was just one of those fluky things. But, because it was high I had to come off of my study drug...
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I'm still unable to post directly from YouTube, but the Tillmans have put up the following video. Check it out, and Celebrate! Grin! http://www.youtube.com/watch?v=F8CYKPz_kHg
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Well, I’ve been hanging in there with the CPAP every night. I’ve got little marks on my cheeks now to prove it. I still can’t seem to get through a night though. Well, I do, but I’m up several times a night messing with the mask. Last night I did a new...
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Regular blog readers have heard me whine before about my fatigue issues. It’s been a problem since college, and lately, it’s been a big problem. When you fall asleep standing up against a telephone pole at the bus stop and the bus has to honk at you to...
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The biannual DelVecchio Garage Sale, a.k.a. HPS flea market was held this past weekend. Marie says they made $795, roughly. That's an aweful lot of nickles, dimes and quarters! Way to go DelVecchio family! Marie has been doing this fundraiser for...
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Don't miss your chance to register for NOAH's 12th National Conference in Las Vegas at the special early bird discounted rate! Save big and spread-out the payments! Waiting for your tax incentive check or trying to pull together the funds to make...
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One of the other missions of the week during my NIH visit was to get an IUD inserted. I hadn’t blogged much about this, but it’s really been a time issue and not because it’s too personal. Women with Hermansky-Pudlak Syndrome frequently develop problems...
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What a week. What is it they say about the best laid plans? This admission at NIH was supposed to be maybe a bit longer than the usual Pirfenidone trial admission, but still pretty simple and routine. And from the perspective of the trial, everything...
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Boy do I have a lot to blog about! It's been a very long week at NIH. But, in the meantime, Ryan posted this to the HPS Adults listserv and since I missed the big event, I wanted to pass it along to everyone that's been following the progress...
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Well, I'm here. The flight was great. I really do love Midwest Express. I hope nothing happens to them with all the rises in gas prices etc. It is so nice to fly and not feel like you've been wedged into your seat like freight. Hector met me at...
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The Tillmans do such a good job of putting together video - here's a video of the kids in child care playing in the park at conference! http://uk.youtube.com/watch?v=zL6avUVKUcI
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