Hi you guys, please contact me anytime. I am a mom of four boys, thankfully only one of my boys has the gene. My oldest who is 11 now. He was diagnosed with severe hemophilia Type A at birth after a circumcision that went horribly wrong. He bled and bled and eventually was transported to another hospital where they then found the problem. He had to have two litters of blood transfusions, seems like a lot! Don't it? IT was a scary ordeal for me, here I was a new mom at 19 years old. I should mention I am also deaf on top of all this! It was very nerve wracking but we made it through. The more we learned about his disorder and the more we experienced with it the more comfortable we grew. Now to be honest with you I am more worried about his asthma than I am his hemophilia. His hemophilia is so well maintained/controlled while the asthma attacks are unpredictable.
He is on Xyntha three times a week, what they call prophylaxis (a preventive treatment). What it basically does is prevent the bleeds from happening, stops it before it starts. My son being so severe he would bleed constantly just spontainiously or from something as simple as a big hug or lifting him up under the arms. He would get joint/muscle bleeds and sometimes butt cheek bleeds just from learning to crawl/walk. We would double pad his diapers and he had a special helmet that was donated from the hemophilia society as well as knee and elbow pads, he looked like a hockey player! lol I have to admit it was adorable and it also protected him.
I admit when he was first diagnosed we were hoping he was moderate or mild. The kids who are moderate tend to only need infusions once a month maybe less. The kids who are mild, gosh! They only need treatment during major procedures like surgeries or in the event of a major trauma. But sadly he was diagnosed as severe. It was a huge blow but we learned to deal with it and like I said we are so very comfortable with his disorder now, the dos and don'ts and how to treat him.
Was your son diagnosed as severe, moderate, or mild? Also I should mention when My son was first born they thought he was moderate at first and it turned out this was only because he still has his "mommy's factor" inside of him once that was gone they retested him and found he was severe. He has less than 1% factor in his body.
Do you know if anyone else in the family has this disorder? We all thought I had the gene and I was the carrier because oddly enough my mother had a couson with a son who also had severe hemophilia. It turns out after being tested myself I do not even carry it and my son is the first of the line, he has what they call a genetic mutation.
Short explaination of how it is passed when it is in the family, the female carries it and passes it to her son, her son then passes it to his daughter as a carrier and the daughter passes it to her son, it's a big cycle. It is very rare for a female to have hemophilia but it does happen. That's why in most of those support books you will read it says "he" "him" "your son" because it is typically known as a male disorder. I could be wrong but I think in order for the girl to have the gene both parents (mom and dad) also have to have it.
Well I cannot think of anything else off the top of my head but please contact me anytime for any support or questions.
We used to live in Saint Louis Missouri and then moved to Wyoming four years ago, a very brave move lol. I admit I am disappointed in the medical care here and I think we will be moving back home or elsewhere near a hemophilia center in the near future depending on the economy :-/
Hugs to you and your family
Stephanie

Hi , my son was diagnosed with severe hemophilia out of the blue when he was tiny. He is now a happy adult with a full active life. I Iknow how difficult it can be when you first get that diagnosis. If you would find any more information helpful on what it is like to live with hemophilia and come to terms with it in family life my book: Missing Factor (by Marie Berger) is available from Amazon as an ebook. My son has written the last chapter which shows how normal life can be with this condition. You understandably feel very worried at this point but I can promise you that once you find out more about it you will learn to relax more and worry far less and enjoy your lovely twins. Like you we knew nothing about hemophilia when Nathan was first diagnosed. Eventually, it faded so far in importance into the background that his hemopilia is rarely mentioned. His sister has mild hemopilia and is a carrier. She has never had any problems. Any help i can give please feel free to contact me.

My son has severe hemo. A, and he is 10 years old. It runs in my family, as I am a carrier. I grew up around Hemophilia all my life, as my father had it, as well as my nephew and cousin. If there is anything you would like to know, just ask. We do prophy everyother day, and he has a port as of right now. I know it seems scary, but you will learn the do's and don'ts as he grows up. Let me know if I can be any help.

Hi, My son has severe Haemophilia A and he was diagnosed at 11 months. As a dad I was worried that he would not be able to participate in sports etc... we kept up his injections and he has reached 12 years old in mint condition. He had two ports over 10 years and now we are on to IV injections in his arms. I never thought we would be able to cope with the pressure and responsibility but we managed it. He now plays football for a premiership football club academy. So don't worry about his future, we have to jump through a few hoops and we have to deal with a lot of pressure, but you can achieve anything you set your mind to!

Hemophilia A is observed almost exclusively in males, occurring as commonly as about 1 in every 10,000 males, while hemophilia B occurs in about 1 in 30,000 males. The reason for this bias is purely scientific (read genetic). Read more: http://www.scientificanimations.com/who-gets-hemophilia-how/?utm_source=Forum