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Depression and Heart Disease

Women and Bleeding Disorders: Living with von Willebrand Disease

♪ Music ♪ I was four years old
when I was diagnosed. I was actually jumping up and down behind this very couch. In a different home. I bit my tongue pretty bad. It started swelling and bleeding really bad. I went to the emergency room, they wrapped it, sent us home, and we kept having to come back because it just wouldn’t stop bleeding. I was twenty-six years old and I woke up from
sleeping all night and I was covered in bruises. I just woke up from sleep
like that. I looked like someone had beat me with a bat. My husband, of course, he was freaking out, like oh my goodness!
What’s wrong with you? So we went to the doctor, and they actually
made him leave the room because they wanted to question me about any form of abuse. I was actually supposed to
have surgery for being diagnosed with endometriosis. And, I was having the pre-labs for that and they discovered They actually thought it was a computer error, because my levels were really low and almost nonexistent. So they sent me to a hematologist. Sometimes I would have about three or four appointments, in a day. And they would test me for everything, but they never found it until the hematologist just put it all together. I had heavy periods to the point where I actually missed my eighth grade and my senior year of high school. I could not go to school. I could not walk for a long time. I couldn’t do anything. I thought it was kind of normal for everybody to have
long periods. It was just normal to me. I think my shortest period was twelve days and the longest was 6 months. When I was a baby, when I was first born
I had bruises… Playing around when I was little I actually cut my leg and it bled for probably six or seven hours until we went to the emergency room. Before we kind of figured it was kind of scary. Growing up I would
go to the dentist and my teeth would just bleed and bleed and bleed. You know we didn’t know
(I guess) to test. Which I don’t know why we didn’t think about that because my dad also had severe von Willebrand disease. Of course, my monthly cycles were just horrible. But, I always thought they were normal until I found out that no, this is not normal. This is really bad. There was definitely embarrassment, only with periods. Just because, they were so heavy and you know it would go through you clothes. They actually put me on birth control when I was in middle school. So that was kind of weird. (Laughs) I was basically the only middle schooler, I felt like, in the whole world that was on birth control
of all things. And when I had to talk about that to people, I would be like, you know, it’s not to prevent pregnancy, but to help my periods. That’s not something you just walk up to somebody and say oh tell me about your monthly cycle. Right. But, that’s something people need to be more aware of. Because it’s not normal and there is help out there. So,so much help. From the time I started having my periods until my diagnosis was probably about
a year and a half. So when I finally did get diagnosed I was excited. I could actually
get some help now. If you have it, then you need to know about it because there are people out there that don’t know about it. It’s important to get diagnosed if you have this, because you do learn your limitations of what you can do and what you can’t do. I have always been worried
that my children would end up with this disease and they have. I have a son, Isaac.
He’s ten months old and has been diagnosed with it as well. I fear more for any girls that I may have because they are the ones that would have to go through the periods and the child birth. Every time I have any kind of procedure done,
any type of surgery, any kind of dental work, like oral surgery or anything like that I have to get
the medicine sent in. You can’t just go in and expect to have a procedure done. It’s got to be well planned out. Definitely, go for
yearly checkups. That’s something that’s very important because if something does happen they have to know how to treat you. You just have to take the
proper precautions and know what to look for and you can live a normal life. Accept the support and kind of, you know, ask all the questions you have.
You know, because I had so many questions. I still have questions now and I’ve been diagnosed for years. You’ve just got to be able to find the right people
to talk to. And, like you said, to be able to talk to somebody that knows exactly what you’re talking about. To be with someone who they went through this same thing. And its like, this could be my best friend. You know like,
lets talk about this. How we found out
is so different. We were each having
different symptoms, but it ended up
being the same thing. I think that’s why it’s so important to be educated and for the doctors
to know more about it because you can’t pinpoint
you can’t have one symptom and assume one diagnosis. Right, everyone has there own story. They kind of told me that I wasn’t going to make it when I was fourteen. Before I was actually diagnosed and so now I just kind of do what makes me happy now that I’m actually under control and everything is ok with me. It’s my version of normal, it’s not normal,
it’s my version of normal. And so, i just kind of do what makes me happy everyday. ¶¶ ♪ Music ♪

14 thoughts on “Women and Bleeding Disorders: Living with von Willebrand Disease

  1. I almost bled to death last year in 7th grade, had 3 blood transfusions so they put me on birth control cause of my disease

  2. I have never been diagnosed with this condition, but back in 2009 with a risk of heavy bleeding through menstural cycles and ovarian cyst. Menorhaigia-metorrhaigia. I have strange periods. My great grandmother hemorriaged to death at 49. These conditions must happen at any age without knowing it. I have bled through my rectum and back in 2011 I had a mystery- I was swelling around my ankles,stomach, arms and retaining fluid. There was a protein in my urine and now I notice a new symptom orange blood in my period blood. I have a mystery that dates to 2011. My body is sensitive and I do briuse easily. If this is what I might have it could be von Willebramds Disease type 1 or 2. Many women don't know they have it.

  3. Unless I am only the prestaged connection to vonWillebrands disease or some form of hemophilia that is unspecified. Hemophiliac of the uterus or womb. I already have periods that last 8-10 days and I know they will worsen when I reach my 40's and I menstruated since 11 years old, and I am now 33 years old. 24 years now which means it will probably worsen in 7-8 years from now.

  4. Some forms of vonWillebrands disease probably doesn't show until some women reach about 40's. I had bleeding gums when I went to the dentist as a child.

  5. Mennorphagia-metorrhagia could very well be a closely related condition to vonWillebrands disease or hemophilia. It seems to be a different from hemophilia. It's a condition that causes heavy and prolonged menstural period bleeding.

  6. I was diagnosed when I was 2 years old during a pre-op for surgery. It only got worse after I hit puberty, I have to get IV treatments for helping slow the blood. I would be bedridden for a month during one of my periods and I had to force myself to wake up most days. I was on birth control by age 12 to help the bleeding and I have to jump from one birth control to another to keep my period in check. What sucks is I got a tattoo it bled so much during the time I got it and I had to do a treatment afterwards to help the bleeding and healing.

  7. I was diagnosed with menorrhagia after I had my first child I started hemorrhaging four weeks after and lost my job because of it . I would miss three days every month due to heavy bleeding but I would bleed for seven eight days and doctors just ignored it. I had to use two super pads from my start of my pelvis to the top of my crack of my butt then I’d wear super tampons and panties that were sold for that time of the month. I was also had anemia . My doctor tried estrogen pills but stopped them. My mother was also a heavy bleeder. I had to accept this as normal. My doctor told me the only way to cure this is to have a hysterectomy. I didn’t want to lose the chance to have one more child which never happened. I started menopause when I hit fifty and was so glad that it just stopped and never started again. It was a blessing. I know know that it must have been von willebrand disease and my daughters have it to.

  8. I have Von Willebrands but it's not as severe as these women's. Still, I am anxious about pregnancy a little bit and complications from that. I suffer from fatigue and migraines and also easy bruising and bleeding, though not to that extent. It gets better when my period is done (fatigue and migraines), especially these days with altering my diet to be sensitive to my food sensitivities and with taking progesterone cream for my hormone imbalance.

  9. I struggle with this also. I was put on birth control before junior high because of my periods. It is a very strange and unpredictable problem I have. If anyone has anything to say please comment because it is an issue and I would love to hear what you have to say regarding

  10. Now I'm 36 years old, and dealing with a period going in day 17 and counting! I have passed blood clots larger than a quarter. It's now flooding out of me.

  11. Not fun! Was in my late teens and diagnosed. Abuse questions for family entire life. Dentist procedures were planned for weekends for me to "recover."
    I was a tomboy.
    I had many bad events bleed for days.

  12. I have this as well, it sucks because I have to wear a medical bracelet all day. I also have to get a depo shot every 3 months because birth control makes me sick. I missed almost 3 months worth of 5th grade as well.

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