Don't you also have trouble stopping bleeding from even a small cut? Let's talk about von Willebrand Disease!

Do you sometimes have a small cut that doesn't stop bleeding for a long time? Or do you have frequent nosebleeds? Maybe someone in your family has similar problems? If so, this is something that may be important to you. Today we're going to talk about a rare but very common condition called von Willebrand Disease .

What is von Willebrand Disease?

Simply put, von Willebrand Disease is a disease in which our blood does not clot properly, meaning that the process that helps stop bleeding is weakened. This is often hereditary , meaning that parents can pass the disease on to their children. But don't worry, there is a treatment for this. Doctors can give you medications that help with this blood clotting process.

What happens to someone with von Willebrand Disease?

A person with this disease may bleed more than normal. Just think, even a small cut or a tooth extraction can take a long time to stop bleeding. Some people have frequent nosebleeds. For women, they may bleed heavily during menstruation, or they may bleed heavily after giving birth.

In the most severe cases of the disease, bleeding can sometimes occur for no apparent reason into joints or soft tissues. This can cause swelling and severe pain. For others, it can even lead to anemia , which is a lack of blood .

How common is this condition?

This is actually the most common bleeding disorder in the world. Some reports suggest that it affects about 1% of the American population. Worldwide, it is estimated that between 23 and 110 per million people may have the condition. However, these numbers can vary, as some people may have bleeding problems but not be diagnosed with von Willebrand Disease . Some people may have had these problems for years, but are not diagnosed until it is too late.

Are von Willebrand disease and hemophilia the same thing?

Yes, while both are blood clotting problems, von Willebrand Disease is a condition that usually has fewer symptoms and is less severe than hemophilia . But that doesn't mean it's something to ignore.

What are the symptoms of von Willebrand Disease?

Many people with the disease may have no symptoms at all , or only very mild symptoms. However, those with more severe disease may experience symptoms such as:

• Nosebleed : This is not just a normal bleed. It can be bleeding for more than 10 minutes, or bleeding from the nose more than five times a year.
• Bleeding from a wound: Bleeding from a small cut or other wound for more than 10 minutes.
• Bruises: People with this disease get bruises very easily. These bruises are not just flat on the skin, but can be slightly swollen and raised like a lump. These bruises can also be larger than a five rupee coin.
• Iron -deficiency anemia : Anemia is a condition in which the body does not have enough red blood cells . Iron deficiency anemia occurs when our body does not have enough iron to make hemoglobin . This substance, called hemoglobin, helps red blood cells carry oxygen. So, when we lose too much blood, we can also lose iron, which can lead to this condition.
• Bleeding after surgery: People with this disease can bleed profusely, even after minor surgery, such as tooth extraction.
• Heavy menstruation : For some women, if their menstrual bleeding is so heavy that they have to change their pad or tampon every hour, or if their period lasts for more than seven days, it may be a symptom of this condition.
• Heavy bleeding after childbirth or a miscarriage.
• Blood in the stool: Whether you have blood in your stool or blood after you have passed stool, it could be a sign of another medical condition. Therefore , you should definitely see a doctor .
• Blood in the urine (hematuria): If you notice blood when you urinate, especially if the blood is accompanied by a sudden urge to urinate, tell a doctor immediately .

The most important thing is that if you have one or more of these symptoms, do not ignore them and see a doctor for advice.

What causes von Willebrand Disease?

This is a genetic disease . This means that this disease is caused by a change (mutation) in our genes. Due to these genetic changes, our body cannot properly produce a protein called von Willebrand factor . These factors are proteins that help our blood clot.

This von Willebrand factor is found in the plasma (the liquid part of the blood), platelets (cells that help blood clot), and the walls of blood vessels . Normally, when a blood vessel is damaged, platelets stick to the damaged area, forming a blood clot and stopping the bleeding. The von Willebrand factor is what helps these platelets stick together properly. So, when this factor is missing in sufficient amounts, or even completely missing, the platelets can't stick together properly. Then it takes longer for a blood clot to form.

Most people get the disease by inheriting a mutated gene from one of their parents . This is called autosomal dominant inheritance . Others can inherit the mutated gene from both parents . This is called autosomal recessive inheritance , and it is the most severe form of the disease. A person who carries this mutated gene has a 50% chance of passing the mutation on to their children.

Also, sometimes von Willebrand disease can occur as a complication of other medical conditions, such as cancers , autoimmune disorders , heart disease, and blood vessel diseases.

How do doctors diagnose von Willebrand Disease?

When you see a doctor, they will first ask you about your symptoms. They may also ask if anyone in your family has had similar symptoms or bleeding disorders. Then they may do some tests, such as:

• Complete blood count (CBC): This measures the number of red blood cells, different types of white blood cells, and platelets in your blood. It also measures the amount of hemoglobin in your red blood cells. Most people with von Willebrand disease have a normal CBC. However, people who bleed a lot may have low hemoglobin and low red blood cell counts.
• Platelet aggregation tests: This tests how well your platelets stick together to help form blood clots.
• Activated partial thromboplastin time test (APTT): This tests for von Willebrand factor and other clotting factors that help blood clot. If the levels of these factors are lower than normal, it takes longer for the blood to clot.
• Prothrombin time (PT) test: This also measures other blood clotting factors.
• Fibrinogen test: Fibrinogen is another protein that helps blood clot.
• Von Willebrand factor antigen test: This measures the amount of the von Willebrand factor protein in your blood.
• Ristocetin cofactor test: This assesses the activity of von Willebrand factor.
• Von Willebrand factor multimers test: This looks at the structure of the factor.

Your doctor may need to do several blood tests to confirm the diagnosis, because things like hormone levels can change the level of von Willebrand factor in your blood.

There are several types of von Willebrand disease. Doctors will do more tests to find out exactly which type you have. These types are:

• Type 1: This is the most common type. Between 60% and 80% of patients have this type. These people have low levels of von Willebrand factor in their blood. They may not have symptoms. If they do, they are very mild.
• Type 2: In this type, von Willebrand factor does not work properly. These people may experience mild to moderate bleeding. Between 15% and 30% of patients have this type.
• Type 3: This is the most severe type. It is also very rare. It affects between 5% and 10% of patients. These people have very low levels of von Willebrand factor in their blood, or none at all. This can cause severe bleeding problems.

What are the treatments for von Willebrand Disease?

Doctors treat this disease with various types of medications:

• (Desmopressin): This is a hormone. It increases the level of von Willebrand factor in the blood. This is the most common treatment for this disease.
• Von Willebrand factor infusions: Some people are given this factor through a vein to stop bleeding. This treatment can be given before surgery. Some people with severe disease may need to receive this treatment regularly to keep the factor levels in their blood stable.
• Antifibrinolytics: These medications work by preventing the breakdown of blood clots. Your doctor may prescribe these medications if you are having dental surgery or if you are experiencing heavy menstrual bleeding.
• Birth control pills: These help those who have heavy menstrual bleeding. The estrogen hormone in these pills increases the level of von Willebrand factor in the blood.

Can I reduce the risk of developing this disease?

This is often hereditary . If your parents have this disease, you can inherit it from one or both of them. So there is nothing we can do to prevent it from developing.

If I have this condition, what should I expect?

Doctors can treat von Willebrand disease, but they can’t cure it completely . Most people have either type 1 or type 2. They only need treatment if they have an injury or need surgery. People with type 3 may need ongoing medical treatment to control bleeding.

I have von Willebrand Disease. How should I take care of myself?

Since most people have mild to moderate symptoms, living with this disease means taking a few things into consideration:

• Avoid activities that can cause injury: It is best to stay away from high-impact sports, for example, football, rugby, and hockey.
• Tell all your doctors, including your dentist, that you have this condition: they can then plan how to control bleeding after surgery.
• Do not use aspirin or medications containing aspirin.
• Do not use nonsteroidal anti-inflammatory drugs (NSAIDs) , such as ibuprofen, unless prescribed by a doctor who knows you have von Willebrand disease.
• Avoid taking nutritional supplements containing vitamin E, fish oil, and turmeric.
• Consider a medical alert identification: Wearing a bracelet like this or carrying an identification card can help you get appropriate medical attention in an emergency.

When should I go to the hospital urgently?

Go to the hospital immediately any time you are bleeding uncontrollably . Even if it is a minor injury, if the bleeding does not stop, be sure to seek medical advice.

What questions should I ask the doctor?

If you have von Willebrand disease, you may have questions about how the disease will affect your life. Here are some questions you can ask your doctor:

• Why did I get this disease?
• Can my children inherit this disease?
• Will this get worse?
• What are the treatments for this?
• What are the side effects of the treatment?
• Will I not be able to do certain things, such as traveling or playing sports, because of this disease?

In summary, the things we need to remember are

Von Willebrand disease is a very common, genetic blood clotting disorder. Most people have mild to moderate symptoms. They may have frequent nosebleeds, or even minor cuts may take a long time to stop bleeding. Others have severe symptoms. For example, they may have bleeding into their joints and joint pain.

Some people may not know they have the condition for years. If you have it, it may be a relief to know why you have bleeding problems. You may also be worried that your children will also develop the condition. Although doctors cannot cure the condition, they can treat it . They can also answer your questions about whether your children will inherit it. They can also give you the information you need to live with von Willebrand disease so that it doesn't stop you from living an active, normal life. So, don't worry, if you understand it and manage it properly, you can live well with it.