Adults: 26+ years of age
In two-thirds of the cases of hemophilia, the condition is inherited. But in about a third of cases, however, there is no family history. People with mild hemophilia are sometimes not diagnosed until they reach adulthood, perhaps after a prolonged bleed following surgery. Some women may only be identified as carriers after they have a child with hemophilia. For anyone affected by hemophilia, issues of family and children are often a large concern as they settle down.
Prophylaxis infusion therapy
In recent years, many people with hemophilia, especially those with severe hemophilia, have begun to receive factor treatment as prophylaxis – to help prevent bleeding, rather than treating it afterwards. Prophylactic factor infusions are given just before an activity, or on a regular schedule (usually every 2 or 3 days) to maintain consistent clotting factor levels in the blood. Prophylaxis infusion therapy can result in fewer bleeds and help prevent joint damage.
Planning a family
If you or your partner have hemophilia or are a carrier, there are important issues to consider when planning a family. Because the condition is an inherited genetic disorder, there is a chance that you could pass it on to your children. The gene mutation that causes hemophilia can be passed on through either the father or the mother:
- A father with hemophilia will have boys without hemophilia and girls who will be carriers.
A mother who carries the gene for hemophilia has a 50/50 chance of having a boy with hemophilia and a 50/50 chance of having a girl who is a carrier, with each pregnancy.
Learn more about how hemophilia is inherited
The role of genetic counselling
If you’re thinking about starting a family with your partner, you may want to consult a genetic counsellor. A genetic counsellor is someone who is trained to educate and guide people about the risks of passing on conditions to their children. Some information they may discuss with you:
- It is very important that a carrier mother's doctor knows during her pregnancy that she is a carrier. This way, she can be provided the best care possible during pregnancy and delivery. Factor levels may need to be tested during pregnancy (usually at 28 and 34 weeks) so that precautions can be taken to reduce the risk of excessive bleeding.
- The sex of the baby should also be identified in advance, at least to the doctor. If it is a boy that might have hemophilia, a plan can be developed in case of complications.
Still looking for answers?See FAQs about hemophilia and adults
To find a Hemophilia Treatment Centre (HTC) near you, search the Canadian Hemophilia Society’s online directory:www.hemophilia.ca / en / treatment-centres