SO IVE HEARD...
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SO IVE HEARD,
well i am a smoker. yes, i know its bad, sorry to disappoint you but i know this already and i dont need to know about the risks etc. dont you even think about lecturing me on this one.
and on the occasion i might smoke a little dope too. im .. experimenting. gosh.
anyway. does thi... More >>
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Return to radio
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Hey brothers and sisters! I hope this post finds you and yours doing great! Please watch for my new FB page coming soon: Stan Anick returns to radio after a 21year hiatus! I need help choosing a new "stage" name...stay tuned!... More >>
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Roller Coaster: Living with Hemophilia
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The words “roller coaster” can be used to describe an amusement park ride with tight turns, steep slopes, and definitely a fast ride. Those words can also be used figuratively to describe something that goes through wild and unpredictable changes. I think the words roller coaster fittingly describ... More >>
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Question,
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does it cause long term physical issues if one (such as lazy me) doesnt keep up with profolatic care?
and something totally off topic, but still
Whats the go with sex? no i havent, but i havent because im fearful of the concequences from this disease..... More >>
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Newbie Here
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Just wanted to introduce myself. I'm Mickey, a soon to be 35yr old Hemophiliac in So. Cal.... More >>
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Exercise
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I'm looking for some non traditional answers to the what exercises are good for us. I know swimming and biking, I have a bike and a small community pool plus Rec Center membership with a pool there too. I really need to lose weight to help my arthritis and also my random bleeds. I have recently st... More >>
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confused n frustrated
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i have a problem with joint bleeds im highly uncoordinated so
sport really isnt my thing to keep them moving and keeping them in good shape. my bad one is the left elbow.
the range of motion is about 45 degrees and thats as far as its ever
gone for as long as i can remember. i use my right arm (el... More >>
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To all fathers
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Facebook has a group for fathers that deal with Hemophilia. Were a small group right now there are only 8 members but they are nice group of men. Please stop by and see us.
http://www.facebook.com/#!/group.php?gid=95229498513
Thank you
Eric
... More >>
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A new facebook Group
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There's a new FB group call Hemophilia support Group, We cater to the bleeding disorder community. We also are the to keep everyone informed about what is coming up,Summer camps, any meetings that are going on. Please join us at
http://www.facebook.com/group.php?gid=111624935553223&v=app_2344... More >>
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Chase Community Giving Back Contest
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Hi everyone,I was on Facebook earlier tonight and realized that my local Hemophilia Chapter is participating in the Chase Community Giving Back Contest. Our Chapter will receive $20,000 from Chase IF we are in the top 200 charities! Here's the catch... the contest ends in THREE DAYS! If you could,... More >>
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Kids
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I was having a conversation with a friend, and the subject of people that have bleeding disorders having kids came up. She said that if any of her kids had a bleeding disorder she would not want her child to have kids because she would not want her child to go though what she had gone though. I sa... More >>
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New
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Hello everyone,
i am new to this website, a friend i met off a forum introduced me here as a recently wanted to find more out about hemophilia in other people. I did feel like the only one. i am pretty much the only girl with hemophilia in my country, Australia. I have severe hemophilia type a, i ... More >>
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frustrated!
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Hey everyone, been a while since i posted. Farrah and I have been doing well with Hayze, who is now 19 months old. He has been on prophy since Feb and we felt secure being able to treat him ourselves at home. We were content with him running around being a little boy, since we have plenty of facto... More >>
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For Crystal Divine, An Angel With Broken Wings
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Hello Crystal, I read your posts each day and I can see that you are troubled, an angel with broken wings. As a child I was very much like you born with severe hemophilia A, I faced each day confronted with the adversity of my condition. I spent most every Halloween, Christmas, Easter, my birthday... More >>
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WFH WORLD CONGRESS in ARGENTINA from 6th July 2010 - 15th July 2010
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Hi friends at MBB, I am glad to inform you that I am going to attend the World Congress & General Assembly of World Federation of Hemophilia in Buenos Aires, Argentina from 6th July 2010 till 15th July 2010.Therefore if some members of MBB are also participating in the World Congress than we c... More >>
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Camp Little Oak a camp for female hemophiliacs!!!! and vonWillebrands, siblings and carriers in upstate NY
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HELP! Homer Everson and I are looking for female counselors for CLO in August from the 7th to 14th. Preferrably someone with a bleeding disorder or a family or friend of a bleeder "who gets it". lol
We are in our 5th year!!! and are shooting for 20 girls! So if you know of a girl who would like to... More >>
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The Story about Christmas Disease
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Christmas Disease and Hemophilia
Inherited Blood Disorders
From Mary Kugler, R.N., former About.com Guide
Updated: December 22, 2008
About.com Health's Disease and Condition content is reviewed by our Medical Review Board
See More About:
hemophilia
blood cell disorders
Hemophilia is caused by... More >>
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Strange Hemophilia
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I think I have a strange form of hemophilia. I mean, I do have hemophilia but it's strange because I am low in factors 8, 9, 11 (it varies from day to day-supposedly). It seems like I've never heard of anyone else having this form of hemophilia. When I get a bleed it's only because of a trauma suc... More >>
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My emotions and hemophilia
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Has anyone else ever noticed that they're emotions can effect they're hemophilia? Let me explain, before everyone thinks I'm crazy!
When I was growing up, my family lived in North Carolina, and every summer we would vacation for a week at the beach. It never failed, come the day to leave on vacati... More >>
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Introduction...
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Hello,Hello,
My name is Brenda Santa Cruz and I am the proud parent of a 4 mon. old,
beautiful, little boy named, Carlos. My son was diagnosed with Hemo A on
1/5/10
after his circumcision. I have no family history of the condition so my
husband
and I were completely shocked. I'm so grateful to ha... More >>
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Motorcycles . . . anyone here crazy enough to ride?
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I've been riding for the last four years. I went to the local HD dealer and looked at two used bikes. They had a used Road King for 15K or a Moto Guzzi for 3800.00. hmmmm . . . had to think a lot about that! The Guzzi has been a great bike and I've never regretted buying it. I've been putting on a... More >>
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Anyone here get depressed when having a bleed?
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For me, I was well into my thirties when I made the connection, when I get a bleed, I get sad. All the health care providers would do is to treat the bleeds and make you better, but I never had anyone address my sadness.
Just making the connection has done wonders for me and my outlook on bleeds a... More >>
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Waynes Stuff
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When my brother Wayne (Severe VIII w/ AIDS) died in '94 Mommy wouldn't let me help her with his "stuff." She wouldn't even let me in his room.
When Mom passed in '02, Daddy let me do a little bit, but then we discovered she had done a lot of stashing, he said "Don't worry about it, I'll take care... More >>
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To My Older Brothers!
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Hello Brothers:
I am a 32 year old severe hemophiliac with chronic joint disease. I have spoken to several orthopedic doctors and also several hematologist regarding joint replacement. At the current time, I am dealing with a bad lt. knee and rt. hip. Surgeons recommend to replacement both joints... More >>
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Remembering....
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Today, I read a letter Sir Elton John wrote to the late Ryan White, which was published in The Washington Post on 4/25/10.
Ryan White's life and death impacted millions of people. He faced adversity, insults and injustices with courage and dignity. After reading this story, I thought of my oldes... More >>
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Getting a new house!
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I'm so excited! My husband and I recently started the process to purchase a new home for our family. :) Our current home is a little over 1700 square feet - three bedrooms with a fourth made by turning the front room into a bedroom. Having 6-8 kiddos in such a small space has been trying to say th... More >>
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Hemophilila Symposium
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Can't wait to see you all at the Hemophilia Federation's symposium next weekend! I'm excited to attend, but am dreading the 10 hour car ride with my six kiddos. We were going to put a dvd system in our van, but decided to put a down payment on a new house instead! So now I'm trying to come up with... More >>
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Long term survivors aka "The 2000"
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Read a stat the other day by the CDC. " There was around 25,000 severe hemophiliacs prior to the AIDS epidemic, 10,000 to 15,000 got infected, there's now fewer then 2000 left. What worked for you? Me, I stayed out of the drug trials and away from the cocktails til the early "90's, and tried about... More >>
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FACEBOOK FANPAGE IS GROWING
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hey everyone theres been a new fanpage open and its growing good support system for our familes n friends with hemophilia everyone welcome to join it if you wish heres the name... More >>
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Ryan White
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Today's the 20-year anniversary of the passing of Ryan White, a hemophiliac who changed the course of HIV. Thanks, Ryan! You gone but not forgotten!!!... More >>
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