Von Willebrand disease is a lifelong disorder that is often inherited. This disease causes improper blood clotting, which can cause potentially serious and abnormal bleeding after an accident, trauma, surgery or dental work.
Nosebleeds, blood in the urine or stool and bruising are also common with von Willebrand disease. In women, this disease affects the menstrual flow, leading to abnormally heavy periods, large blood clots and sometimes anemia.
Von Willebrand disease inheritance is the result of a faulty gene being passed down that directly affects a protein in the blood that helps to regulate the blood-clotting process. For some, the symptoms may be mild, and it may be years or even decades before a person is diagnosed, and for others, diagnosis may occur in childhood.
It is estimated that approximately one percent of the general population has congenital von Willebrand disease, of one type or another. There are three main types, defined depending on the severity of symptoms. In addition to the inherited disease, there is also acquired von Willebrand disease that appears later in life.
Acquired von Willebrand disease, or AvWD, is not inherited and is considered extremely rare. It is most often diagnosed in elderly patients, and the medical community still can’t pinpoint the exact causes associated with AvWD, but it is often linked to an underlying disease, including certain types of cancer and even hypothyroidism.
While there is no cure, for any of the types, von Willebrand disease treatment can help manage symptoms and improve the overall quality of life.
What is von Willebrand Disease?
Von Willebrand disease is a blood clotting disorder that can cause abnormal bleeding. The most common of von Willebrand disease types are those that have a genetic link, where a damaged gene is passed from a parent to a child.
A specific protein that regulates blood clotting is known as the von Willebrand factor. The danger with this disease is if you become injured, have surgery or dental work, it can be difficult, sometimes extremely difficult, to stop the bleeding. In rare cases, bleeding may even cause death.
There are three types of this disease that are inherited:
Von Willebrand disease Type 1:
Approximately 75 percent of those diagnosed with von Willebrand disease have Type 1, making it by far the most common. The signs and symptoms are typically mild with this type.
Von Willebrand disease Type 2:
In Type 2, the von Willebrand factor (the protein), doesn’t function properly, causing more significant bleeding and symptoms. There are several subtypes of this type related to specific genetic mutations. Proper diagnosis is vital as each of the subtypes requires specific treatment.
Von Willebrand disease Type 3:
This type is the most serious form; people with Type 3 may have no von Willebrand factor at all to help the blood clot. Type 3 von Willebrand disease is only possible if both parents have the disease.
In addition to the inherited types of the disease, acquired von Willebrand disease is also possible. Considered extremely rare, this type is most often diagnosed in the elderly that have another underlying disease or disorder.
Certain autoimmune diseases, including systemic lupus erythematosus, as well as cardiovascular diseases may cause AvWD, but research is still trying to understand this extremely rare form of the blood disorder.
Signs & Symptoms
Recognized von Willebrand disease symptoms include:
- Easily bruising
- Lumpy bruises
- Bleeding gums, sometimes excessively
- Nosebleeds that are heavy and don’t stop within 10 minutes
- Excessive bleeding after a cut or injury
- Excessive bleeding during or after surgery or dental work
- Blood in stool
- Hematuria, or blood in the urine
Symptoms of von Willebrand disease in women:
- Abnormally heaving bleeding during menstruation
- Needing to change menstrual pad or tampon more than hourly, or needing double protection
- Large blood clots (greater than one inch in diameter) during menstrual flow
- Symptoms of anemia, including fatigue, shortness of breath or tiredness
- Dysmenorrhea, extreme pain during the menstrual cycle.
- Abdominal pain (and sometimes bleeding) during ovulation
The Haemophilia Association of Australia recommends that women and girls with von Willebrand disease have a comprehensive medical team that includes a gynecologist with experience in the disease, a hematologist and a general practitioner, and that all members stay in contact when any aspect of the health changes.
Causes & Risk Factors
An inherited genetic mutation in the von Willebrand factor, the protein responsible for blood clotting, is the cause of the disease. Many of those with von Willebrand disease also have low levels of a substance called factor VIII. This substance is related to another blood clotting disorder, hemophilia.
Men and women are equally affected by von Willebrand disease, but women are more likely to experience complications and more severe symptoms due to menstruation, pregnancy and childbirth. Acquired von Willebrand Disease is caused by an underlying medical condition, not a genetic mutation, and likely doesn’t appear until later in life.
This disease is a lifelong journey that requires kids to avoid contact sports and other activities. It is imperative that children be given an opportunity to engage in other activities and have access to a support network.
A von Hillebrand disease diagnosis requires a variety of tests, and if it is expected, a hematologist will likely take the lead in diagnosis and treatment. Tests may include:
- A physical examination to check for bruises
- Blood tests to:
- Check for the von Willebrand factor
- Measure how well the von Willebrand factor works in your system
- Determine levels of factor VIII
- Evaluate von Willebrand factor and how it behaves to determine the type of the disease
Von Willebrand disease testing may have to be repeated from time to time, especially if symptoms worsen, if you take new medications, become pregnant, have chronic stress or develop an infection.
Conventional treatment depends on the type of the disease you have. Types are determined by how the gene has mutated as well as the severity of your symptoms. A treatment plan may include:
- Desmopressin, a synthetic hormone that controls bleeding by stimulating the body to release more von Willebrand factor. This medication may be prescribed to those with Type 1 and some of the Type 2 subtypes.
- Replacement therapy that includes concentrated doses of blood clotting factors and factor VIII. This medication can be effective for all three types of von Willebrand disease.
- Clot-stabilizing medications, including Amicar, Lysteda and others to help stop bleeding. They are often prescribed after an injury, tooth extraction or surgical procedure.
- Tisseel VHSD, a topical sealant applied to a cut that helps to stop bleeding.
- Contraceptives for women to help control heavy bleeding during menstrual periods. For some women, estrogen hormones can boost von Willebrand factor and factor VIII activity.
6 Natural Ways to Help Manage von Willebrand Disease
1. Vitamin C
Vitamin C may help protect the body from bruising, keeps gums healthy and can aid in the healing of cuts and wounds. In a clinical trial published in the journal Diabetes Care, patients with type 2 diabetes given two grams a day of vitamin C showed an improvement in von Willebrand factor significantly greater than the placebo group.
This is a high dose of vitamin C, and the study focused on short-term treatment. Instead of a high dose for the long-term, eating vitamin C-rich foods including guava, red bell peppers, kiwi and oranges may help symptoms.
2. Vitamin K
While supplements are available, vitamin K-rich foods may be a better choice for those with von Willebrand disease. Add leafy greens like dandelion, mustard greens, spinach, kale, turnip and Swiss chard to your diet each day to make sure you are getting the recommended dietary allowance (RDA) for your age group.
Essential for making new cells, folate works with vitamin B12 to form hemoglobin in red blood cells. A deficiency may contribute to anemia, common in women and girls with von Willebrand disease.
The recommended RDA for folate according to the National Institutes of Health is:
- Infants and babies: 65 micrograms/day
- Children ages 1—8: 80—150 micrograms/day
- Teens ages 8—13: 300 micrograms/day
- Adult men and women (above age 14): 400 micrograms/day
- Pregnant women: 600 micrograms/day
- Women who are breast-feeding: 500 micrograms/day
4. Natural painkillers
Instead of over-the-counter or prescription painkillers that can cause bleeding, choose a natural painkiller to relieve headaches, PMS symptoms and other discomforts.
To relieve headaches, pain associated with fibromyalgia and myofascial pain syndrome, peppermint essential oil diffused or massaged into painful areas may help according to a review of clinical trials and case studies looking into medicinal plants as pain therapy; members of the Lamiacea family, including rosemary, peppermint and others, show promise according to a review published in the journal Pain Research & Management.
5. Stay Active
Walk and do other non-contact activities to stay healthy, maintain a healthy weight and to fight depression and anxiety. Pilates, yoga, Tai Chi and other practices where both the mind and the body are engaged are a great choice for von Willebrand disease patients.
Childhood obesity is a risk due to the lack of typical physical activities kids normally take part in. It is important to find non-contact activities a child with von Willebrand enjoys; tennis, swimming, dancing, golf or cycling may be good options.
6. Treat Nosebleeds Naturally
The first step is sit comfortably and leaning forward, just a bit. Squeeze to close the nostrils. Maintain this until the bleeding stops. Cold compresses may help restrict blood flow and induce a sense of calm.
In addition, the Haemophilia Foundation of Australia recommends avoiding hot liquids and strenuous exercise for at least 24 hours after bleeding stops as it can cause the nose to start bleeding again.
If bleeding happens in the joint or soft tissue, severe pain and swelling can occur. Avoid activities that cause bruising, including contact sports. In rare cases, uncontrollable bleeding can be life-threatening, and emergency medical attention is required. If you have von Willebrand disease, any type, it is imperative that all physicians, dentists, nurses and dental hygienists know of the disorder and the severity of the symptoms. Consider wearing a medical ID bracelet in the event of an accident.
Women with abnormally heavy bleeding during menstruation are at an increased risk for developing anemia. Prior to becoming pregnant, women should discuss the potential challenges and dangers with your medical team. For women beginning menopause, the fluctuation in hormones may cause unpredictable and heavy bleeding. Stay in close contact with your gynecologist and hematologist if changes occur.
Talk to your medical team before taking any of the following medications as they are known to increase bleeding:
- All NSAIDs, including ibuprofen, Toradol and others
- All antiplatelet agents, including aspirin, Plavix and others
- All anticoagulants, including Miradon, Lovenox, Heparin and Warfarin
Talk to your hematologist before taking any natural supplements, as they can interact with certain prescribed medications or thin the blood. Supplements known to affect bleeding, according to Stanford University School of Medicine’s Department of Otolaryngology-Head & Neck Surgery, include:
- Birch bark
- Evening primrose oil
- Gingko biloba
- Grapeseed extract
- Milk thistle
- Omega-3 Fatty acids
- Onion extract
- St. John’s wort
- Vitamin C
- Vitamin E
- Von Willebrand disease is a blood clotting disorder with no cure.
- This disease is most often caused by an inherited gene mutation, affecting the von Willebrand factor, a protein that helps blood clot.
- In addition to the inherited type, acquired von Willebrand disease can appear later in life and is associated with underlying health conditions.
- For women, symptoms may be more severe due to menstrual cycles, pregnancy and giving birth.
- Individuals with von Willebrand disease must avoid certain medications and supplements known to increase bleeding, as well as contact sports.
- Wearing a medical ID is advised.
You can help manage von Willebrand disease naturally by:
- Considering supplementing with vitamin C, vitamin K and folate.
- Choosing natural painkillers.
- Staying active in gentle ways.
- Treating nosebleeds naturally.
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