Coping with VWD Disease or Von Willebrand Disease

VWD disease, or Von Willebrand disease, is a genetic disease that is when you are missing the Von Willebrand factor in your blood causing your blood to have difficulty clotting.  This is a form of hemophilia discovered by Erik Adolf von Willebrand in 1870. Willebrand was a Finnish internal medicine doctor who took a special interest in blood and its coagulation process, leading him to discover this disease.  VWD disease is a bleeding disorder in which the blood doesn’t clot appropriately due to the lack of or defective VWD factor in the blood. The VWD factor is a clotting protein within the blood. This is a lifelong disorder that is passed on from either one of both parents to their child.  At this time it is not curable but people with this disease can live an active healthy life.

There are different types of Von Willebrand disease. 

Type 1:  This is the most common of the types.  It has the most mild signs and symptoms.  This is when the VWD factor in your blood is just low.  It can take some time to diagnose due to symptoms being so mild. 

Type 2: This type is when the VWD factor doesn’t function properly.  It doesn’t clot the blood the way that it should. Signs and symptoms are more significant.  

Type 3:  This is the most severe type.  VWD factor is completely missing from the person’s blood.  Signs and symptoms are severe. A major symptom can be bleeding into your joints and muscles.  You can only have this type of VWD is both parents pass on the gene to their baby.  

Symptoms

Depending on what type of Von Willebrand disease you have will depend on what symptoms you have.  With the most common type having very mild to no symptoms, sometimes it is hard to know if you have this disease at first.  Some symptoms can include excessive bleeding when injured, nosebleeds that do not stop after 10 minutes, blood in urine or stool, and easy bruising or lumpy bruises.  Another symptom is heavy or long menstrual bleeding in women. There are some signs that will help you know if the heavy menstrual bleeding is more than just a heavy period.  If you experience menstrual clots that are more than 2 inches in length. If you have a need to change your sanitary products more often than every hour. If you are having to use double sanitary products to maintain flow.  Or if you are having signs of anemia, tiredness, fatigue, or shortness of breath. 

Diagnoses

If you experience any of these symptoms you should contact your doctor and they will run some tests to diagnose what is behind them.  Your doctor if he feels that VWD disease maybe what is causing your trouble will run some blood tests to diagnose you. These blood tests will test your levels to see if your VWD factor is low or missing.  Over time your levels can change so your doctor may repeat these tests. Once you have been diagnosed there are some treatments that can help your symptoms or manage your condition. Your doctor may want to prescribe you contraceptives, for women with VWD disease that have heavy menstrual bleeding.  The contraceptive pills can be effective in helping alleviate heavy menstrual bleeding in women. Another medication your doctor may want you to take are clot-stabilizing medications. These may be prescribed to you before you have to undergo a surgery or a dental procedure where you may bleed.  

Changes You Can Make

Along with things your doctor can do for you to manage the disease there are also lifestyle changes that you can make at home.  Make sure you stay active to have a healthy body weight and a healthy lifestyle. Though you will want to steer clear of some activities that can cause bruising, such as football, hockey and wrestling.  Be aware of what kind of pain relievers you are taking. Do not use blood thinning medications such as aspirin or ibuprofen. Switch to tylenol instead. Make sure you disclose this information of having Von Willebrand disease to all your doctors, and dentists so they are aware before they put you in a situation that could cause you harm.  Such as a surgery or a dental extraction. If you have a severe case of VWD you may want to think of wearing a medical ID bracelet to let emergency personnel be aware of your condition in case of an emergency situation.  

Complications

Von Willebrand disease can lead to some other complications.  It can lead to anemia, especially in women who lose a lot of blood during a heavy menstrual cycle. Another complication that VWD disease can lead to swelling and joint pain.  This is caused from bleeding into the joints or soft tissue. Though this is very rare VWD disease can lead to death, this is if bleeding becomes uncontrollable usually after a major injury has happened.  

Von Willebrand disease is an incurable genetic blood disorder.  Parents that carry the gene have about a fifty percent chance to pass on the gene to their child.  If both parents have the gene and it gets passed from both parents to their child then they have Type 3 VWD disease which is the most severe.  Parents may not know they carry the gene until one of their children is diagnosed with VWD. VWD though it can be severe rarely leads to death.  People with VWD can live full active lives with just a few minor restrictions. It can be hard for children with the disease to not be able to do some sports because of the disease, but it doesn’t mean they still can’t be kids and be active in ways that just may not lead to bruising. If you have any signs or symptoms or have shown a heavy amount of bleeding from small injuries you will want to reach out to your doctor.