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Well, how's this for a medical mystery?
There's a serious blood disorder that you may suffer from, and
it's not uncommon at all.
In fact, it's not even a mystery to blood specialists.
What is a mystery is diagnosing it, and here, to help us create
awareness this morning about this condition is hematologist,
Dr. Doris Quan from Los Angeles.
Good morning, doctor.
Good morning.
Thank you.
Thank you so much for coming this morning.
Let's talk about this.
What is it called, and what exactly is it?
It's called von Willebrand Disease.
von Willebrand Disease.
I've never heard of it.
It is a bleeding disorder that people are born with.
It affects, actually, a lot more people than you would think.
The milder forms can affect up to 1 in 100.
The more severe forms, up to maybe 1 in 10,000
Again, it's a bleeding disorder that you're born with.
It affects both men and women, equally.
Mmm-hmm.
It's due to a deficiency in a factor called Von Willebrand
factor, which is in your blood, and this Von Willebrand factor
helps stop bleeding.
It helps blood to clot.
So, when you cut yourself, you use a Von Willebrand factor to,
it's a glue like material, and it helps you to stop bleeding.
So what's the difference from say this disorder, doctor, and
hemophilia?
Well, hemophilia is actually more commonly known, because
it's been called the royal disease, because it was in Queen
Victoria's family.
That's right.
So, Von WIllebrand's disease was actually, when it was first
discovered by Dr. Eric Von Willebrand, it's named after
him, he termed it actually pseudo
hemophilia because it was found in both men and women, whereas
hemophilia, the disease affects mostly men.
So doctor, do people with this disorder bleed uncontrollably,
like people with hemophilia?
They bleed similarly, but it's not uncontrollably.
They bleed longer.
They may initially stop bleeding, but then, the sort of
glue-like material is not there, so it just starts bleeding
again, so you get this phenomenon of bleeding longer.
Initially it may stop, but then you have bleeding again.
It's very difficult to control the bleeding if you have trauma
or if you have surgery.
Some of the common bleeding symptoms that you might see,
especially in children, are things like nose bleeds, or gum
bleeding.
After loss of a tooth or dental extraction you may have extended
bleeding.
In women, when they start their periods, they may have
uncontrollable bleeding, and that's termed menorrhagia.
Many women have very heavy menses.
It's very common.
You and I were talking about this a few minutes ago, before
we started our interview here, and you were telling me it could
take up to maybe 10 to 15 years to diagnose this?
Why so much time?
Because it's actually - people don't think about it.
It's a common bleeding disorder, but people don't think that, oh
that the nose bleeds are from a bleeding disorder.
They may think it's from trauma to the nose.
Heavy menses, there's so many reasons why women may have heavy
periods, and so people don't think the menses are actually
from a bleeding disorder, so that's one reason that they just
don't think about it being a diagnosis.
The other thing is that it's actually difficult to make the
diagnosis of Von Willebrand's disease.
The labs that are used to make this diagnosis are not common,
so a regular lab may not be able to order it and get it done
properly because special tubes have to be processed certain
ways.
So, there are a number of factors.
Von Villebrand factor, itself, is affected by so many different
things, such as stress, hormone levels, exercise, activity, so
you're trying to diagnose a child maybe with Von
Willebrand's disease and we all know children when they're
trying to get their blood drawn are screaming and kicking, and
so that will make your Von WIllebrand's levels rise.
And does that make this disorder more dangerous than hemophilia?
It's not necessarily more dangerous than hemophilia, but
again, if somebody hasn't been actually diagnosed
formally, they may have a lot of bleeding after surgery, and that
can be very dangerous if it's not treated properly.
Excellent information.
Doctor, stay right there because we're going to bring in a
patient in just a couple of minutes.
When we come back, we're going to speak to a patient who is
doing so much to create an awareness of this disorder, and
we're also going to talk about treatment options, so stay
there.
We'll be right back.
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Welcome back to The Balancing Act.
We're joined, once again, by hematologist Dr. Doris Quan, and
also we're joined by Darcy Zwyer.
She is a patient advocate for women with bleeding disorders.
Welcome, Darcy.
Thank you.
Thank you for being here.
Darcy, let's talk about what you do.
I understand, you know, many women have bleeding disorders.
You're a patient advocate.
Their lives really change dramatically.
Tell me about that.
Before diagnosis, a woman's quality of life is compromised.
She's unable to lead a normal life, I believe, because of
heavy menstrual bleeding.
A lot of the women I talk to stay home because - It's so hard
to leave the home.
It is.
It can be embarrassing.
I know I missed out on a lot in my childrens' lives because I
wasn't willing to leave and to go, and I did stay home until,
until diagnosis.
And that's really hard, because you want to go to their events.
I go to my daughter's dance competitions all the time, and
like you and many other women, you stay home just within four
walls.
Right.
Dr. Quan, she mentioned diagnosis and treatment.
Let's talk about that.
So, Von Willebrand's disease can be treated.
There are treatments out there.
The first type of treatment can be given to patients with mild
Von Willebrand's, not severe.
That increases the person's own levels to quote more normal
levels and then the bleeding can stop.
There are other treatments for more severe disease, or or more
serious bleeding, and these are products that actually contain
Von Willebrand Factor.
There are several products out on the market and the FDA has
approved three different products in the United States
for treatment and they can be given intravenously.
So there is hope.
There are good treatments out there.
Good treatments.
You just have to make the diagnosis.
Exactly, which is so important, because like we said, it can
take so many years.
Darcy, I understand you also founded a website.
I love the name.
Finethe2percent.com Tell me about that and how the name came
about.
Well, the name came about because up to 2% of the
population has Von Willebrand's disease, and so we want to find
that 2%.
The website offers information about getting a diagnosis, about
the signs and symptoms, and there's some great information
there to take along to the doctor with you to get that
diagnosis.
I love it all.
Creating awareness, and Dr. Quan, any final thoughts?
Well, diagnosis is very important, so if you think you
have a bleeding disorder, you should go and talk to your
doctor about it, and pursue the diagnosis, and if you get
diagnosed, then you can get treated properly.
And know that there is treatment.
There is hope.
Yes, there is.
Thank you so much, Dr. Quan.
Darcy, for information on bleeding disorders or anything
related to what we're talking about today, where can our
viewers go?
Findthe2percent.com.
Findthe2percent.com I love that name.
Thank you so much ladies.
God Bless you, and thank you for everything you do.
And if you would like more information on what we've been
talking about this morning, just go to our website as well,
TheBalancingAct.com That's TheBalancingAct.com We love to
share our segments with you there as well.
Also, we are on Facebook and Twitter, so check us out there
as well.
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