Hemophilia Blood Disease
By Mark Paul
@Mpaul730 (24)
July 11, 2017 2:03pm CST
Hello, my wife and 3 of my daughters have Hemophilia. My wife was not very active as a kid or teen so she did not even know she had it until she was an adult and we found out our daughter now has it. I just wanted to know if there was anyone else out there who also has it. How was your childhood? Did you play sports? What would recommend we do can do to make things easier for our girls?
5 people like this
6 responses
@HannahLeigh518 (164)
• Aurora, Colorado
11 Jul 17
I don't have the disease, but I'm sorry to hear that your family has it. All I can say is that with today's medical technology and help, you guys wil be fine. Have any of them had to have blood transfusions? Have you heard of Ryan White? He had hemophilia, and got a contaminated blood transfusion accidentally that left him with AIDS. I know that won't help to hear, but hopefully this will; today they do lots more tests on stuff like that and it rarely or never happens anymore. I hope you guys have a wonderful life!
1 person likes this
@HannahLeigh518 (164)
• Aurora, Colorado
12 Jul 17
@Mpaul730 The thing about Ryan White was that his blood transfusion was done in the 90's lol. That's why I say you have nothing to worry about! Today's technology has improved a lot since then!
1 person likes this
@Mpaul730 (24)
•
11 Jul 17
Oh wow that sounds awful. Luckily my wife is VERY MUCH against blood transfusions we will never do that. And you're absolutely right, with todays technology we will be fine. My girls actually now have a port in their chest so we can administer their medicine easier. Kind of like having a pic line. They were not fans of getting a needle in the arm. But thanks for the warning about the transfusion. Appreciate it =)
1 person likes this
@TiarasOceanView (70022)
• United States
11 Jul 17
I am sorry to hear this and no one in my family has it Mark. I would have to look up the symptoms.
@Mpaul730 (24)
•
11 Jul 17
Basically what it boils down to is that they have no clot factor. If they get a cut the bleed, A LOT. and if they somehow fall or get hit somewhere and there is no cut they bruise horribly. And when that happens it usually swells up a lot because of all the blood pooling into that area. So just a tap on the forehead will leave a bump the size of a golf ball. And whenever one of them loses a tooth they bleed from the mouth severely.
1 person likes this
@TiarasOceanView (70022)
• United States
11 Jul 17
@Mpaul730 Oh yes now I remember Mark..the bleeding factor..thanks so much for explaining it. I hope someone here will be able to give some help to you.
@Mpaul730 (24)
•
11 Jul 17
@TiarasOceanView we are doing ok, we have medicine we have to inject them with whenever there is a serious fall or a bump or a tooth loss lol I was wondering if anyone out there could share any advice on how hard or easier it will be growing up with it. I already limit their play time outside because just one fall can be fatal. But they are so active, like all children of course.
1 person likes this
@snowy22315 (180870)
• United States
11 Jul 17
Welcome to mylot. I don't know and haven't known anyone with the disease.
@Mpaul730 (24)
•
12 Jul 17
@NJChicaa oh ok I see. The doctors we used to go were very shocked and thought I was the carrier. But it was my wife. We just thought she was one of those people who bruise easily. If she would bump her on the dresser or a desk she would get a bad bruise. She has a weird mutated form.
