Both the patient and the family face many challenges with inhibitors . The ongoing financial and emotional struggles associated with hemophilia are intensified for patients with inhibitors and their families. Living at a distance from expert care may also impact personal and familial issues.
What challenges do people with hemophilia face?
Numerous challenges confront adult hemophilia patients with inhibitors, including difficulty in controlling bleeding episodes , deterioration of joints, arthritic pain, physical disability, emotional turmoil, and social issues.
What are the emotional effects of haemophilia?
Results: People with haemophilia revealing higher anxiety and depression symptoms were more likely to have had, in the previous year, more urgent hospital visits due to haemophilia, more bleeding episodes, more affected joints and pain, as well as worst levels of perceived functionality and quality of life.
How does haemophilia affect intellectual development?
Results showed that hemophilia was associated with substantial brain dysfunction, represented not only by problems with coordination and motor function, but also lower intelligence, academic and adaptive skills , and more behavioral/emotional problems compared to published norms.
How does hemophilia affect the family?
Family challenges can negatively impact the ability of the patient and his family to participate in hemophilia care or adhere to a plan of treatment. These challenges can include divorce, death in the family, school problems, financial problems, and job worries .
Can hemophilia go away?
It lasts all of your life and it will not go away . Hemophilia occurs mainly in males but females can carry the gene that causes it and may or may not have bleeding problems. Some children with hemophilia have no family history of the disorder.
Can you have a baby if you have hemophilia?
If the mother is a hemophilia carrier, there is a chance that the baby will be born with hemophilia . In families with a known history of hemophilia, or in those with a prenatal genetic diagnosis of hemophilia, one can plan special testing for hemophilia before the baby’s delivery.
What famous person has hemophilia?
The love of Elizabeth Taylor’s life and a Shakespearean actor for the ages, Richard Burton starred in 61 films and 30 plays — and was the first Hollywood star to reveal he had hemophilia. In fact, Burton and Taylor set up the Richard Burton Hemophilia Fund in 1964 to help find a cure for hemophilia.
What is the life expectancy of someone with hemophilia?
During this period, it exceeded mortality in the general population by a factor of 2.69 (95% confidence interval [CI]: 2.37-3.05), and median life expectancy in severe hemophilia was 63 years .
What is the everyday life of someone with hemophilia?
Without appropriate treatment, many hemophiliacs will die before adulthood. With treatment, the average life expectancy of someone with the disease is just 10 years less than the average man’s . In the 1960s, the average lifespan for a boy with hemophilia was just 11 years old.
How does hemophilia affect a child?
Key points about hemophilia in children
It causes an affected child to have low levels of blood clotting factors . The most common symptom of hemophilia is increased, uncontrollable bleeding. Giving factor VIII or IX can allow a child with hemophilia to lead a near normal lifestyle.
How do you deal with hemophilia?
- Exercise regularly. Activities such as swimming, bicycle riding and walking can build up muscles while protecting joints. ...
- Avoid certain pain medications. ...
- Avoid blood-thinning medications. ...
- Practice good dental hygiene. ...
- Protect your child from injuries that could cause bleeding.
Is haemophilia A physical disability?
Yes, hemophilia was disabling . Another part of the population that identifies as disabled due to a bleeding disorder are people living in developing and underdeveloped countries.
What is the main cause of hemophilia?
Causes. Hemophilia is caused by a mutation or change , in one of the genes, that provides instructions for making the clotting factor proteins needed to form a blood clot. This change or mutation can prevent the clotting protein from working properly or to be missing altogether.
Why is hemophilia B called Christmas disease?
Hemophilia B occurs when clotting factor IX is either absent or not present in sufficient amounts. Hemophilia B is also known as Christmas disease. It is named after the first person to be diagnosed with the disorder in 1952, Stephen Christmas .
Can females have haemophilia?
Hemophilia can affect women , too
When a female has hemophilia, both X chromosomes are affected or one is affected and the other is missing or non-functioning. In these females, bleeding symptoms can be similar to males with hemophilia. When a female has one affected X chromosome, she is a “carrier” of hemophilia.
