tag:blogger.com,1999:blog-6261031256338113167.post1190583635042505886..comments2023-10-19T11:47:32.043-04:00Comments on Laurie Here - Contemporary Fiction and MORE - Book Reviews: "TODAY", FEB 28th is RARE DISEASE DAY 2013! The 30th Anniversary! Check this out!lauriehere.comhttp://www.blogger.com/profile/09313379396004112698noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-6261031256338113167.post-6907716797781849232013-03-03T02:22:50.763-05:002013-03-03T02:22:50.763-05:00Thank you so much for this awesome post and sharin...Thank you so much for this awesome post and sharing with me. I am late to the party, but so appreciate the message and will try to spread the word about all of us being more aware :)Denise Zhttps://www.blogger.com/profile/17743337429214149474noreply@blogger.comtag:blogger.com,1999:blog-6261031256338113167.post-35361180566019600492013-03-01T12:18:58.257-05:002013-03-01T12:18:58.257-05:00Thank you posting about the Rare Disease Day. I ha...Thank you posting about the Rare Disease Day. I have a rare skin disease called Nodular Prurigo. It starts with an intense itching and leaves horrible open sores. I have it on my shoulders, back, arms, one ear, legs, buttocks.When it heals, it leaves scars. My legs look like a battlefield. Some people have to get skin transplants. I am using special creams and taking light treatments every week. If I stop, it will get worse. There is pain when clothing or beds press against the sores.<br /><br />I have been interested in Stiff Person Syndrome ever since I saw it featured on the TV show Mystery Diagnosis. I have been on daily muscle relaxants for over forty years. If I don't take them, I can't bend. I have forgotten and my husband has to bend parts of my body for me to get out of bed. I have been telling my doctors for ages that without the relaxatants I walk like Frankenstein. They just nod and don't say anything. Also have lots of muscle spasms. I don't have. Sometimes a part of my body gets into a position and I have to really push it back. All that may not be stiff person syndrome but I think it has to be some sort of movement disorder! Will read that paper over very carefully. Thank you again for your great post.<br /><br />Carol N Wonghttps://www.blogger.com/profile/06873206816286352639noreply@blogger.com