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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. ¶¶
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