herald

Tuesday 21 November 2017

I have been diagnosed with a genetic bleeding disorder, are my children also at risk?

I have just been diagnosed with Von Willebrand disease but the only complaint I had was heavy periods.

Very heavy periods is one of the symptoms of Von Willebrand disease, which is a common, inherited bleeding disorder that can affect men and women. A person with this disorder does not have enough of the glue-like protein Von Willebrand Factor (VWF) that helps blood to clot, sealing off tears in injured blood vessels. Often with VWD, the signs are mild or absent, making it difficult to diagnose. Some people never know they have this disorder. Abnormally heavy periods, that may indicate you have this condition, include the need to change your pad or tampon more often than once an hour, blood clots greater than an inch, bleeding that lasts longer than one week, and symptoms of anaemia such as tiredness, fatigue, or shortness of breath.

Can I pass this on to my children?

As VWD is a genetic disorder that is passed from parent to child, your children have a 50pc chance of getting the gene. Some of the features of this disorder in children include recurrent nosebleeds, unexplained bruising or prolonged bleeding after a tooth is pulled. Other signs include bleeding from the gums, bruises with lumps that form underneath the skin, prolonged oozing from cuts, (longer than 15 minutes) or, as in your case, excessive menstrual bleeding. Because this is an inherited disorder, talk to your doctor about genetic counselling and having the rest of the family tested.

Will I need to take medication?

If you have any indication of a bleeding disorder a haematologist will do specific blood tests -- checking bleeding time, factor VIII coagulant, platelet function and the Von Willebrand Factor antigen test.

There are three main types of VWD, with Type 1 being the most common and the mildest form of the disease. The most commonly used treatments include desmopressin (DDAVP), which can be given by injection or taken as a nasal spray. If you have the mild form, treatment may only be recommended when undergoing surgery or dental extractions, or if you suffer an injury.

You should avoid contact sports. Also avoid aspirin and any other NSAIDs (non-steroidal anti-inflammatory drugs) that may increase the risk of bleeding episodes. There is no cure yet, but gene therapy remains an exciting possibility.

Is VWD the same as haemophilia?

No, haemophilia affects males mostly and VWD is also usually the least severe of the clotting disorders.

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