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.