Starting a family with haemophilia

Starting a family with haemophilia

Haemophilia is an inherited disorder, meaning that it is a genetic condition whereby parents pass the haemophilia gene on to their children. This guide is for carriers and people with haemophilia as they think about parenthood and starting a family.

Preparation gives you the best chance

For men living with haemophilia and women who are carriers, consulting with a human geneticist well in advance of a pregnancy will provide you with valuable information about your genetic makeup.1 Also, involving your physician or haemophilia healthcare team from the start will ensure all the necessary steps are taken for a successful pregnancy and birth.2

Thinking about a future family

For men who inherit the haemophilia gene from a mother who is a carrier of haemophilia, the newborn will be checked by a paediatric specialist at the nearest local haemophilia centre to ensure they receive the best level of care. For women who inherit haemophilia from their fathers, they will be registered at the nearest haemophilia centre as a carrier and are likely to want genetic counselling prior to family planning.2,3

Growing up with haemophilia

With modern treatment , most children with haemophilia can grow up to lead full, active lives.4 What’s important to remember is that children get used to their condition. The key thing to remember is that with proper care and effective treatment, children with haemophilia can live perfectly healthy lives.5

The hereditary transmission of haemophilia3

The father has haemophilia, the mother is healthy.
Sons: healthy
Daughters: carriers

The father has haemophilia, the mother is a carrier.
Sons: 50% chance of having haemophilia
Daughters: will be carriers and have 50% chance of having haemophilia

The father is healthy, the mother is a carrier.
Sons: 50% chance of having haemophilia
Daughters: 50% chance of being carriers

Learn more about genetic pedigree from the video* Taking a Genetic Family History – The Pedigree (Haemophilia) created by Genomics Education Programme.

* The external link is owned and operated by a third party over which Sobi has no control or responsibility.

 

References: 1 World Federation of Hemophilia: Genetic Counselling for Hemophilia (Revised edition 2015) 2. Srivastava A, et al. Haemophilia. 2020;00:1–158. 3. Canadian Hemophilia Society. Heredity of hemophilia. (v1.0). 4. Canadian Hemophilia Society. How serious is hemophilia (v1.0). 5. World Federation of Hemophilia. Introduction to hemophilia: Treatment (v1.0)

 

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.

Starting a family with haemophilia

Haemophilia is an inherited disorder, meaning that it is a genetic condition whereby parents pass the haemophilia gene on to their children. This guide is for carriers and people with haemophilia as they think about parenthood and starting a family.

Preparation gives you the best chance

For men living with haemophilia and women who are carriers, consulting with a human geneticist well in advance of a pregnancy will provide you with valuable information about your genetic makeup.1 Also, involving your physician or haemophilia healthcare team from the start will ensure all the necessary steps are taken for a successful pregnancy and birth.2

Thinking about a future family

For men who inherit the haemophilia gene from a mother who is a carrier of haemophilia, the newborn will be checked by a paediatric specialist at the nearest local haemophilia centre to ensure they receive the best level of care. For women who inherit haemophilia from their fathers, they will be registered at the nearest haemophilia centre as a carrier and are likely to want genetic counselling prior to family planning.2,3

Growing up with haemophilia

With modern treatment , most children with haemophilia can grow up to lead full, active lives.4 What’s important to remember is that children get used to their condition. The key thing to remember is that with proper care and effective treatment, children with haemophilia can live perfectly healthy lives.5

The hereditary transmission of haemophilia3

The father has haemophilia, the mother is healthy.
Sons: healthy
Daughters: carriers

The father has haemophilia, the mother is a carrier.
Sons: 50% chance of having haemophilia
Daughters: will be carriers and have 50% chance of having haemophilia

The father is healthy, the mother is a carrier.
Sons: 50% chance of having haemophilia
Daughters: 50% chance of being carriers

Learn more about genetic pedigree from the video* Taking a Genetic Family History – The Pedigree (Haemophilia) created by Genomics Education Programme.

* The external link is owned and operated by a third party over which Sobi has no control or responsibility.

 

References: 1 World Federation of Hemophilia: Genetic Counselling for Hemophilia (Revised edition 2015) 2. Srivastava A, et al. Haemophilia. 2020;00:1–158. 3. Canadian Hemophilia Society. Heredity of hemophilia. (v1.0). 4. Canadian Hemophilia Society. How serious is hemophilia (v1.0). 5. World Federation of Hemophilia. Introduction to hemophilia: Treatment (v1.0)

 

Download ‘My Voice, My Care’ to understand how to get the most out of conversations with your care team.