Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Hi Pink, I just found out my daughter is legally blind also.. I was shocked when she told me. She has glasses thatcorrect her vision. She didn't even need glasses until she was around 30. I forget the name of her problem but it has something to do with re-glaucoma. She gets her eyes checked religiously. Love and Prayers, Peggy IPF 2004, FloridaWorry looks around, Sorry looks back, Faith looks up. Pink Joyce, I heard you say that. I'm legally blind also. When I get around to it, I'll tell you about my amazing blind friends who surf the web using voice-synthesizing softwear. Who believes that hard times help us appreciate the good times even more. From: hkdawn <hkdawn (AT) yahoo (DOT) com>Subject: Hello to the newbies!To: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 12:41 AM I've been lurking lately and just thought I'd say hello. My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. Welcome to the group to all of you. You'll find a lot nice folks here and good info. Personal blog www.heatherkirkwood .blogspot. com Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 jerry i look forward to hearing about it Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Hello to the newbies!To: Breathe-Support Date: Monday, August 10, 2009, 11:08 AM Pink Joyce, I heard you say that. I'm legally blind also. When I get around to it, I'll tell you about my amazing blind friends who surf the web using voice-synthesizing softwear. Who believes that hard times help us appreciate the good times even more. From: hkdawn <hkdawn (AT) yahoo (DOT) com>Subject: Hello to the newbies!To: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 12:41 AM I've been lurking lately and just thought I'd say hello. My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. Welcome to the group to all of you. You'll find a lot nice folks here and good info. Personal blog www.heatherkirkwood .blogspot. com Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 i'm glad trhe glasses correct her vision Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Hello to the newbies!To: Breathe-Support Date: Monday, August 10, 2009, 11:24 AM Hi Pink, I just found out my daughter is legally blind also.. I was shocked when she told me. She has glasses that correct her vision. She didn't even need glasses until she was around 30. I forget the name of her problem but it has something to do with re-glaucoma. She gets her eyes checked religiously. Love and Prayers, Peggy IPF 2004, Florida Worry looks around, Sorry looks back, Faith looks up. Pink Joyce, I heard you say that. I'm legally blind also. When I get around to it, I'll tell you about my amazing blind friends who surf the web using voice-synthesizing softwear. Who believes that hard times help us appreciate the good times even more. From: hkdawn <hkdawn (AT) yahoo (DOT) com>Subject: Hello to the newbies!To: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 12:41 AM I've been lurking lately and just thought I'd say hello. My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. Welcome to the group to all of you. You'll find a lot nice folks here and good info. Personal blog www.heatherkirkwood .blogspot. com Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
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