Frequently Asked Questions
Here are answers to frequently asked questions.
What is blood clotting?
Blood clotting is the process by which a clump forms to repair a blood vessel that
has been damaged.
What is a bleeding disorder?
A bleeding disorder is a disease in which the body can’t form blood clots properly
or quickly enough in order to stop bleeding. von Willebrand disease (VWD) is an
inherited bleeding disorder. In most cases, a person inherits VWD from a parent;
in rare cases, VWD can be acquired.
1 Learn
more about von Willebrand disease.
What is a hematologist?
What is menorrhagia?
Menorrhagia is bleeding during the menstrual cycle that is heavier than normal or
lasts longer than normal. It is a common
symptom
of women with VWD.
What is von Willebrand
disease (VWD)?
VWD is a disease in which a protein called von Willebrand factor (VWF) in a patient’s
blood is deficient or defective. There are three main types of VWD:
Type 1 VWD is a form of VWD in which the VWF is present at lower
than normal levels, affecting blood clotting. Type 1 can be mild, moderate, or severe.
Stimate® Nasal Spray is indicated for use in patients with mild-to-moderate
type 1 VWD.
Type 2 VWD is a form of VWD in which the VWF does not work properly,
affecting blood clotting. There are 4 subtypes of Type 2 VWD: type 2A, 2B, 2M, and
2N.
Type 3 VWD is the most severe form of VWD, in which the VWF is
almost completely missing from the blood.
What are the symptoms
of VWD?
Symptoms include easy bruising; nosebleeds; menorrhagia (heavy or prolonged menstrual
periods); heavy bleeding after a cut; and prolonged or heavy bleeding after minor
surgery, such as having a tooth pulled.
Check
your symptoms here.
Is von Willebrand disease
the same thing as hemophilia?
No. Both VWD and hemophilia are bleeding disorders, but VWD is caused by a deficient
or defective protein in the blood called von Willebrand factor. Hemophilia refers
to bleeding disorders caused by low levels of a type of protein in the blood called
factor VIII (hemophilia A) or factor IX (hemophilia B). While hemophilia may be
more commonly known, VWD is actually a much more common disease. In fact, VWD is
the most common inherited bleeding disorder in humans,2 afflicting about
one in every 100 people.3
How do people get VWD?
In most cases, a person inherits VWD from a parent; in rare cases, VWD can be acquired.
1
You can create your own family tree using our
Family Tree Builder to track the incidence of VWD in your
family.
How can I find out if
I have VWD?
If you have any of the
symptoms of VWD
(for example, easy bruising or frequent nosebleeds), you should get tested. It is
best to see a hematologist—a doctor who specializes in testing for and treating
bleeding disorders—to make or rule out a diagnosis of VWD.
Learn more about getting tested for VWD.
If I have VWD, should
I exercise or play sports?
Every sport or exercise program carries some risk of injury. But if you are fully
prepared and know what to do in case of an injury, the benefits can outweigh the
risks. Print out
Activities to Enjoy
and refer to this handy guide to recommended physical activities for people with
VWD. (Before you begin any physical activity, always consult with a doctor or Hemophilia
Treatment Center to make sure the activity is right for you.)
Should I keep track
of bleeding episodes and medication use?
Yes. Recording your bleeds and medication use can help both you and your doctor
to aid in treatment and in predicting future bleeds. Our handy
Online Bleeding Journal can help you keep track of bleeding
symptoms, doctor appointments, medication, diet, and exercise. Just log onto
allaboutbleeding.com and register to start using this convenient
interactive tool.
Is there a cure for
VWD?
There is currently no cure for VWD, but the disease can be controlled with treatment.
Learn more about
treatment options for
VWD.
What are the treatment
options for VWD?
If you have been diagnosed with VWD, either the von Willebrand factor in your blood
does not work properly, or there is not enough of it. To treat this condition, you
need to replace the VWF that is missing or ineffective. Learn more about
treatment options.
What is von Willebrand
factor (VWF)?
VWF is the clotting protein that is deficient or missing in people with VWD. VWF
is either present at lower than normal levels or does not work properly.
What is von Willebrand
factor (VWF) concentrate?
VWF concentrate is a product made from human plasma for use in the treatment of
VWD; it also contains a protein called factor VIII.
What is desmopressin?
Desmopressin acetate is a synthetic drug that is a copy of a natural hormone. It
acts by releasing von Willebrand factor stored in the lining of the blood vessels.
Two brands of desmopressin acetate are Stimate® Nasal Spray, which is
a high-concentration nasal spray, and DDAVP®, which comes in an injectable
form. NOTE: Stimate® Nasal Spray is a high-concentration nasal spray.
A low-concentration nasal spray is also available, but is used to treat diabetes
insipidus and bed-wetting. The low-concentration nasal spray is NOT effective in
treating VWD. People with VWD should only receive the high concentration form of
desmopressin.1 Be sure to ask for Stimate® Nasal Spray by
name.
What is Stimate®
Nasal Spray?
Stimate
® (desmopressin acetate) Nasal Spray, 1.5 mg/mL is a brand of
high-concentration desmopressin acetate (intranasal) manufactured by Ferring AB
and distributed by CSL Behring. Stimate
® Nasal Spray is approved for
treatment of mild-to-moderate type 1 VWD. Learn more about
Stimate® Nasal Spray.
How does Stimate®
Nasal Spray work?
Stimate
® Nasal Spray works by triggering the body to release stored von
Willebrand factor (VWF) from the tissues into the bloodstream so it can help form
the clots needed to stop bleeding.
5 Learn more about
what to expect with Stimate
® Nasal Spray.
What is Humate-P®?
Humate-P
® (Antihemophilic Factor/von Willebrand Factor Complex (Human)
Dried, Pasteurized) is a product made from human plasma, used in the treatment of
VWD. Humate-P
® contains von Willebrand factor that is most like normal
human plasma, along with another protein called factor VIII. It is also called VWF
concentrate or replacement therapy. Learn more
about
Humate-P®.
How does Humate-P®
work?
Humate-P
® is a factor replacement therapy that works by replacing the
VWF that is missing or ineffective in your plasma. Humate-P
® can be used
in all types of VWD for the treatment of bleeding episodes and the prevention of
bleeding during and after all surgical procedures. Learn more about
Humate-P®.
How often should I
use Stimate® Nasal Spray?
The convenient nasal spray pump provides an efficient, reliable way to administer
your medication. If Stimate
® Nasal Spray is used before surgery, your
hematologist will determine how far in advance of the procedure it should be administered.
Your doctor can determine the need for repeat use of Stimate
® Nasal Spray
by monitoring your condition and through laboratory tests. Use Stimate
®
Nasal Spray exactly as prescribed. Do not use it more frequently without your doctor's
approval. If bleeding is not controlled after using the spray, contact your doctor.
Please see full
prescribing information
or go to
About Stimate® Nasal Spray
for more information.
Can children use Stimate®
Nasal Spray?
Yes. Stimate
® Nasal Spray has been proven safe and effective in children
from 11 months of age to 12 years of age. Use in infants and children will require
careful fluid intake restriction. Excessive water intake can cause hyponatremia
(abnormally low level of sodium in the blood) and water intoxication. Please see
full
prescribing information for
more information.
My doctor said I have
severe type 1 VWD. Can I use Stimate® Nasal Spray?
Stimate
® Nasal Spray is approved for use in patients with mild-to-moderate
type 1 VWD, but Humate-P
® may be a treatment option for some patients
with severe type 1 VWD. Humate-P
® is replacement therapy that can be
used in all types of VWD for the treatment of bleeding episodes and the prevention
of bleeding during and after all surgical procedures. If you feel that Stimate
®
Nasal Spray or other treatments do not adequately control your bleeding; if you
have types 2 or 3 VWD; or if you have severe type 1 VWD, Humate-P
® may
be the right option for you. Visit
HumateP.com for more information.
What is a bleeding
disorder treatment center?
More commonly known as a Hemophilia Treatment Center or HTC, there are about 150
of these federally funded treatment centers. HTCs offer comprehensive health management
and prevention services to people with bleeding disorders. Go to our
HTC locator to find the center nearest you.
Do Hemophilia Treatment
Centers help people with VWD?
Yes. HTCs offer comprehensive health management and prevention services to people
with bleeding disorders, including VWD. Go to our
HTC locator to find the center nearest you.
3. Rodeghiero F, Castamon G, Din F. Epidemiological investigation of the prevalence
of von Willebrand disease. Blood. 1987;69:454-459.
4. White GC II, Montgomery RR. Clinical aspects of and therapy for von Willebrand
disease. In: Hoffman R, Benz EJ Jr, Shattil SJ, et al, eds. Hematology: Basic Principles
and Practice. 3rd ed. New York, NY: Churchill Livingstone Inc; 2000:1946-1958.
5. Ewenstein BM. von Willebrand’s disease. Annu Rev Med.1997;48:525-542.