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Your FitnessIn response to the mass message that went out last week, we'd love to hear about your fitness. Leave your story here. Started by David MooreLatest Reply |
MigrationI'm hemophiliac ,27 years old student from morocco, the contry isn't a rich one so the health care here for hemophiliac isn't good (if it e… Started by ezzi mohammedLatest Reply |
cutting teethMy 5 month old is cutting teeth but they dont seem to be coming threw yet. We had giving him teething rings and everything but sometimes it… Started by EstherLatest Reply |
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TattoosDoes anyone know if it is possible to get a tattoo with severe 8? I have been thinking about getting one lately but now I really want to g… Started by Bobby Strom |
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4 hours ago Reply by Daniel LiVolsi |
Pilot's licenseHello, does anybody know, whether hemophilia is a disqualifying condition for getting a pilot's license? Started by Martin Zidek |
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Mar 12 Reply by R. Louise Cobb |
Your FitnessIn response to the mass message that went out last week, we'd love to hear about your fitness. Leave your story here. Started by David Moore |
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Mar 7 Reply by Andy Blackledge |
cutting teethMy 5 month old is cutting teeth but they dont seem to be coming threw yet. We had giving him teething rings and everything but sometimes it… Started by Esther |
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Feb 21 Reply by manishfusion |
MigrationI'm hemophiliac ,27 years old student from morocco, the contry isn't a rich one so the health care here for hemophiliac isn't good (if it e… Started by ezzi mohammed |
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Jan 24 Reply by samuell price |
JobsHello all. I was just wondering what fellow hemophiliacs do for jobs/careers. I am finding it hard to find something that I like that also… Started by Bobby Strom |
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Nov. 24, 2009 Reply by ezzi mohammed |
School Tales: how does it work in real life?I am hoping that some of you moms & kids out there will post about starting school and the trials and such that you went through. What… Started by Carri Nease |
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Oct. 15, 2009 Reply by Karen Oroud |
Signs & Symptoms of Port InfectionsHi, If you have ever had a problem with a port infection can you tell me what symptoms were present. My son is 14.... he was last accesse… Started by Tonya |
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Oct. 2, 2009 Reply by Tammy Davenport |
Josh Valance Update 8/19/09For those of you who know my husband, he is restng in the hospital with renal complications. If you know how to contact me directly, please… Started by Mary Beverstein-Valance |
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Sep. 21, 2009 Reply by Josh Valance |
Reaching out to my BrothersMy name is Ray Benitez and I’m a 29 year old with severe hemophilia. Until recently, I have not been and have not wanted to be involved in… Started by Ray Benitez |
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Aug. 16, 2009 Reply by Dhawal |
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“Vale a pena ler de novo!”O que vou fazer quando crescer?/ Meeting to Talk about jobs, life
Erika Okazaki, is hematologist in our multidisciplinary team at the hemophilia center. She is very sensitive and is fond of psychosocial matters! She had a course about Project’s Management at Vanzolini Foundation in São Paulo and had the great idea of applying her studies to promote with a group of other professionals, A PROJECT FOR [...]
looks like planet Mars…/Parece Marte!
Atacama desert in sunset…PHOTOGRAPHY can be a good job option! No deserto do Atacama, o pôr do astro sol! Fotografar sería um bom emprego para quem tem hemofilia Tagged: art, Bloody Art and photography, hemophilia, red, Young
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Your Child Has Hemophlia!
I will never forget the day those words were spoken to me! All three times!I have three sons with severe hemophilia A. With no family history this was quite A shock to us! Our HTC provided us with a wealth of information. We also found wonderful resources at our local hemophilia chapter as well as the National Hemophilia Foundation. One thing that helped me was being able to talk to other moms who had kids with hemophilia. However 26 years ago that was a bit of a challenge! I am thrilled to be part of Hemophilia Moms so I can share my experiences with all of you!
I was so frustrated all those years ago when no one could answer a question that I felt was pretty straight forwar. " How big is a bruise before it is a bleed?" I always got the same answer..."you will know!" Now how was I going to know? I had never seen a "bleed"! I barely knew what hemophilia was! However, when my son had his first bleed....I knew it! When he had his first spontanious bleed....I knew! As mothers we need to trust ourselves. Take advatage of all the resources that are available! Twenty six years ago I would have loved to be able to talk to other moms in my shoes with the click of a mouse!
How did you feel when your son was diagnoised? How did you know your child had a bleed?
Make it a great day!
Lori
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