Our grateful thanks to the Haemophilia Society for their input to our radio feature which you can hear again via the audio player at the bottom of this page. Click here to connect with the Haemophilia Society website. Our thanks also to the NHS for the information below.
Bleeding disorders are a group of conditions in which there is a problem with the body's blood clotting process. These disorders can lead to heavy and prolonged bleeding after an injury. Bleeding can also begin on its own.
Haemophilia is a rare condition that affects the blood's ability to clot. It's usually inherited. Most people who have it are male.
Normally, when you cut yourself, substances in your blood known as clotting factors mix with blood cells called platelets to make your blood sticky and form a clot. This makes the bleeding stop eventually.
People with haemophilia do not have as many clotting factors as they should have in their blood. This means they bleed for longer than usual.
The symptoms of haemophilia can be mild to severe, depending on the level of clotting factors you have.
The main symptom is bleeding that does not stop.
People with haemophilia may have:
Tests and diagnosis. Blood tests can diagnose haemophilia and find out how severe it is.
If there's no family history of haemophilia, it's usually diagnosed when a child begins to walk or crawl.
Mild haemophilia may only be discovered later, usually after an injury or a dental or surgical procedure.
Genetic tests and pregnancy. If you have a family history of haemophilia and you're planning to get pregnant, genetic and genomic testing can help you find out the risk of passing the condition on to a child.
This may involve testing a sample of your tissue or blood to look for signs of the genetic change that causes haemophilia.
Treatments for haemophilia.There's no cure for haemophilia, but treatment usually allows a person with the condition to enjoy a good quality of life.
Man-made clotting factors are given as medicines to prevent and treat prolonged bleeding. These medicines are given as an injection.
In milder cases, injections are usually only given in response to prolonged bleeding. More severe cases are treated with regular injections to prevent bleeding.
Living with haemophilia. With treatment, most people with haemophilia can live a normal life.
However, you should:
Von Willebrand disease (VWD) is a common inherited condition that can make you bleed more easily than normal.
People with VWD have a low level of a substance called von Willebrand factor in their blood, or it does not work very well.
Von Willebrand factor helps blood cells stick together (clot) when you bleed. If there's not enough of it or it does not work properly, it takes longer for bleeding to stop.
There's currently no cure for VWD, but it does not usually cause serious problems and most people with it can live normal, active lives.
The symptoms of VWD may start at any age. They can range from very mild and barely noticeable to frequent and severe.
The main symptoms are:
In some people, there's also a small risk of problems such as bleeding in the gut (causing bleeding from the bottom) and painful bleeds into joints and muscles.
When to get medical help? See a GP if you have symptoms of VWD, especially if someone else in your family has it.
If the GP thinks you might have a bleeding problem, they may refer you to a hospital specialist for blood tests to check for conditions like VWD. Tell your doctor if you have a history of it in your family.
If you've already been diagnosed with VWD, contact your specialist if:
Go to A&E if you have very heavy bleeding or bleeding that does not stop.
Treatment and lifestyle advice for von Willebrand disease. There's currently no cure for VWD, but it can usually be controlled with medicines and some simple lifestyle measures.
Treating and preventing bleeds. If you're bleeding, applying pressure to the wound (or pinching the soft part of your nose if you have a nosebleed) for a few minutes may be all you need to do.
Your doctor may also give you medicine to help stop bleeding when it happens.
There are 3 main medicines that can help stop bleeds:
These medicines can also be used before a procedure or operation to reduce the risk of bleeding. If you have severe VWD, you may need to take them regularly to help prevent serious bleeds.
If your doctor recommends medicine, talk to them about the best option for you and ask about the side effects of each medicine.
Treatments for heavy periods. If VWD causes you to have heavy periods, speak to your GP or specialist about treatments to help control the bleeding.
in severe cases, von Willebrand factor concentrate
If you have VWD, you should:
Types of von Willebrand disease. There are several types of VWD. The main types are:
These 3 types are all inherited.
There's also a rare type that is not inherited called "acquired von Willebrand disease". This can start at any age and is usually associated with other conditions that affect the blood, immune system or heart.
How von Willebrand disease is inherited. VWD is often caused by a fault in the gene involved in the production of von Willebrand factor.
The type of VWD a person is born with mostly depends on whether they inherit copies of this faulty gene from 1 or both parents.
If a parent has a genetic fault that causes VWD – there's a 1 in 2 (50%) chance of a child having type 1 or type 2 VWD, and no chance of them having type 3 VWD.
If both parents have a fault in the VWD gene – there's a 1 in 2 (50%) chance of a child being a carrier like their parents and a 1 in 4 (25%) chance of them having type 3 VWD.
The chances of inheriting type 1 VWD can also be affected by other things, including blood group. People with blood group O are more often affected than people with blood group A or B.
This means it's not always easy to predict whether a child might inherit it from their parents.
Parents who are carriers of a faulty VWF gene may not have symptoms themselves.
Speak to your specialist if you have VWD and are thinking about having a baby. If you have a family history of VWD and think you might be affected, you should ideally have tests before you get pregnant.
Pregnancy and von Willebrand disease. You can have children if you have VWD, even if it's severe. But there's a risk of:
Speak to your doctor about your options if you're planning to have a baby. They may suggest genetic testing to see if your baby is at risk of being born with VWD.
You can also have tests towards the end of your pregnancy to check the level of von Willebrand factor in your blood. Medicine to help prevent bleeding during labour will be offered if your level is low.
You'll probably be advised to give birth in a specialist hospital in case there are any problems. Most women can give birth either vaginally or by caesarean section. It's rare for babies with VWD to have any problems with bleeding during birth.
Listen to this weeks radio report
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