Dealing with your Bleeding Disorder
While haemophilia mostly affects males, females carry the genetic defect which results in haemophilia and many female carriers may also suffer from bleeding problems. Carriers who have less than 50% of the normal level of factor VIII or IX can be considered to have mild haemophilia or a symptomatic carrier. von Willebrand’s disease (vWD) is the most common bleeding disorder to affect teenage girls and women. Such bleeding disorders pose a number of risks for teenage girls with a bleeding disorder such as severe menstrual bleeding, frequent nosebleeds and complications post-surgery, trauma or dental work.
More girls than we think are affected by bleeding disorders. Some girls are diagnosed when they are young, others in their teenage years. This can be a shock and difficult to grasp at first until you get used to it. The most common bleeding disorder among girls is von Willebrand’s disease. This condition varies in severity, and in its milder form often goes undetected, unless unusual bleeding occurs. The symptoms for girls with vWD often are heavy or long periods, but the majority live completely normal lives. So don’t get upset: It doesn’t mean you have to stop having fun, you just need to take care of yourself. Get in touch with your local Haemophilia Treatment Centre and make the most of all the information and support available.
Do get help if your period:
- Causes you a lot of pain
- Interferes with your school or social life
- Causes ‘flooding’ or leakage
You should be monitored by a medical team including:
- A gynaecologist
- A haematologist experienced in treating bleeding disorders
- A family doctor or paediatrician
You may feel particularly tired as a result of heavy periods. You may not feel like going out and would rather stay at home. Blood contains iron, so your tiredness may be linked to anaemia (low levels of iron). Your doctor may prescribe iron supplements to help you overcome the symptoms.
The main types of treatment are:
Desmopressin (DDAVP) is an effective treatment for Type 1 vWD, for menorrhagia and minor bleeds, and for some Type 2 vWD. It is a synthetic hormone that can be given by nose spray or injection.
Tranexamic acid (in tablets or syrup form) is useful for reducing the blood flow and reducing the body’s natural process of breaking down a clot.
Oral contraceptive pills (the pill) can help regulate periods and make them lighter and less painful. Other contraceptive methods, such as Depo-Provera and Zoladex injections, are also used to manage
Above all, being prepared will help you feel confident. By carrying an extra make up bag with you containing pads, wipes, you won’t ever get caught out! Also, you may want to choose higher absorbencies of towels or tampons. Read the leaflet carefully before using tampons, and wash your hands before putting it in. Tampons need changing every 4-8 hours and remember to remove the last one at the end of your period.
You may be used to bruising easily because of your condition. Teenagers often feel more conscious of bruises because of the attention they can bring. Teenagers can also bruise more, due to changes in your body which can make you a bit clumsier. If possible, try not to worry about them. Tell your friends so that they don’t ask you every time they see a bruise on you.
People who get frequent nosebleeds might worry about other people noticing the clots they leave. However, try not to remove them, and tilt your head forward not backwards. Using an ice pack, cold compress or bag of frozen food on your nose and neck will help. Pinch your nose until the bleeding stops. Avoid bending over or blowing your nose as this may start it again.
If you have a severe form of bleeding disorder such as type 3 vWD, you may at times get spontaneous bleeds into muscles and joints, your internal organs or digestive system caused by no particular knock or injury. These bleeds will need urgent treatment, whether at your Centre or at home if you have learned how to do so yourself.
If you frequently get mouth bleeds, you may feel sensitive about the taste or smell of blood. Carrying mouth fresheners or chewing can help. You may want to contact your Treatment Centre to advise you about special mouthwashes to help stop the bleeding. Ice pops and ice lollies can help too!
Lots of girls live with a bleeding disorder and manage it well. They may bruise a bit easier and get heavier periods, but it is not the end of the world, and doesn’t stop them from doing what they want. It involves being prepared by having your medication at hand, carrying bandages for cuts, scrapes, and accidents; pads or tampons for your period. Many girls find that having a good relationship with the nurse at their Centre is a very useful source of support.
Most girls with vWD don’t know anyone else who has a bleeding disorder. Sometimes it is comforting to know that other people are going through the same thing as you. It does help to share experiences and ask questions of someone your own age.
Don’t keep it a secret. It is a good idea to tell a few friends about your condition. Most people are very supportive and understanding. If you don’t quite know how to tell them, give them a leaflet.
Some girls feel bad about having a bleeding disorder but it’s not something that you choose, you’re born with it and it’s no one’s fault. Make use of all the help and support that’s there for you. Meeting other girls in the same situation can make a big difference. Get in touch with your centre or the Irish Haemophilia Society, if you would like to talk to somebody.