Hemophilia Support Group

Hemophilia is the name of any of several hereditary genetic illnesses that impair the body's ability to control bleeding.When a blood vessel is injured, a scab will not form and the vessel can continue to bleed excessively for a very long period of time. The bleeding can be external, if the skin is broken by a scrape, cut or abrasion, or it can be internal, into muscles, joints or hollow organs.

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  • I noticed a while ago that my Daughter kept bruising very easily, and I was really concerned about this along with prolonged bleeding, i.e when she loses a tooth, she can bleed for over half hour. I took her to the GP and was referred to the hospital, they ran blood tests and sent off her bloods to another hospital for further testing. I have had this done also in the past, and I was confirmed to...
  • I am considering an ankle arthoscope, or ankle fusion as a last resort.I would love to know if anyone has a similar story to tell.I'm a 34 yr old male in decent shape. "Severe Factor VIII deficiency"
  • Hi everyone Hope all is good for you this Sunday :) I just wanted to post some important and REAL market research that is taking place. This is all worth doing as we need to help as we can. Apart from anything else I also work for the company and wanted to share this with you. IMPORTANT MARKET RESEARCH STUDY :$150 FOR YOUR TIME AND HELP. We are running an important study to help us better...
  • deleted_user

    New techniques

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    My son Jabari is hemophilia with inhibitors. see my profile. I keep hearing medical people say there are nare cheaper techniques for taking hemophilia factor..some say patches that get absobants into the blood stream, plug in hand scan lazars that release factor, surups, in halers, body ointment rub that penetrates, new pills, heath store pills, acne puncture, inserts that go under the skin,...
  • lacoursed

    Hemophilia and jobs?

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    I have a question. Are there any programs for those with hemophilia or jobs that offer medical right off the bat? cause im on ssi im 23 and I am working on getting my GED but I need more of a income then 743 a month its just not cutting it, and I have a messed up ankle and wrist that bleed if too much is done. That is why I am asking if there is any job I can work that will give me medical so I...
  • deleted_user

    groin bleeding

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    Anyone know of anything that works to help a groin bleed? Adult male, ice is pretty tough to keep on there....
  • jeray611

    vWD & Surgery

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    Hi,Fingers crossed I'm supposed to have surgery in 12 days, that is if I can pass the pre-op. I'm just in a lot of fear at the moment. I have gone thru a handful of smaller procedures and had to have transfusions and aside from childhood surgeries I don't remember. I wanted to talk to someone who has experienced this before. My aunt is the only one in my family who knows exactly what I'm...
  • I'm mild hemophiliac FVIII with 30+ years of 5%-15% FVIII levels. Having cleared HCV my levels are 60%>120% by labs at HTC. NIH confirmed my hemophilia. Doctors are not able to explain the unusual lab results and I tend to think this may be due to lab error, but that seems unlikely. Has anyone experienced large fluctuations in FVIII? Does this suggest other underlying issues? Suggestions for...
  • SteveP1

    Help

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    I can summarise how I am feeling: My CP has destroyed my kidneys and my movement, My Haemophilia has destroyed my joints and the person I turned to most for support has turned out to hurt me like no one else ever has and cost me my biggest passion and enjoyment of everything else. Nothing and no one is truly helping me feel any better. I am looking to share support and experiences with those in a...
  • SteveP1

    Spontaneous Nose Bleeds

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    Hi everyone, I have had this in the past, but recently I have been getting spontaneous nose bleeds regardless of whether I have had a transfusion that morning or not. Some are quite big some stop pretty quickly. I don't think it's just due to the heat. although it has been 30-40 degrees Celsius here in Australia lately. Has anyone else experienced this?
  • Hey all! Hope everyone is doin great, my name is Sharee and I was diagnosed with Von Willebrands Disease type I at age 6. I am a newlywed and planning for a baby next year so it would be really cool to meet other friends like me, especially women who have been through child birth with hemophelia! Im also here for support so lets be buddies in helping each other know and understand the...
  • deleted_user

    Social Services

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    Hello my name is Elena and I am the mother to three boys two of which have hemophilia. I wanted to know if there are other parents out there who have had to deal with social services and other people like that with children who have hemophilia. I don't want to discuss what has happened to me just yet but I would like to know if other people have been through what I have. If you would like to you...
  • deleted_user

    Ankle replacement

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    I'm scheduled for a total ankle replacement using the Scandinavian Total Ankle Replacement System (STARS). I'd be interesting in learning experiences from anyone who has gone through the procedure, adapting the home, the PT, and how they negotiated the no-weight-bearing requirements. Thanks!
  • SteveP1

    Looking for support

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    Hi everyone, my name is Steve, I'll be as brief as possible. I have severe haemophilia A (less than 1%), but the injections and the limitations on what activities I can and can't do I have largely come to accept. However I also have Cerebral Palsy, and in the last few years my kidneys have been a major cause for concern, they are currently doing what they can to avoid needing dialysis and or a...
  • deleted_user

    New & worried

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    Hi everyone. we've just found out 5 days ago that our 4 month old boy has sever Haemophilia. He is a twin and his sister will be tested soon. Haemophilia has never been in my family or my husbands family so we are both clueless about this condition.I'm worried for him and what his life will be like.Any advice I'd welcome.