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Anna from Australia |   |
Facts
| Name |
Anna |
| Age |
23 |
| Location |
Hobart, Australia |
| Occupation |
Full time student (Bachelor of teaching) |
| Bleeding disorder |
Haemophilia |
| Type |
A - carrier |
Questions and answers
How much does the bleeding disorder affect your life?
At the moment, my carrier status does not greatly affect my day-to-day life. It becomes an important consideration when facing surgery. My greatest concern if about the future, and how my carrier status affects the next generation, as my affected genes may be passed on to my children. This is a concern for my future, but with things moving so quickly in the area of IVF and pre-implantation genetic diagnosis it may be that I can have healthy children who do not inherit my affected gene at all.
Which possibilities for treatment do you have?
As a carrier, I do not require treatment on any regular basis. Treatment only becomes an issue for me when facing major surgery, usually where a general anaesthetic is required. In this situation, the doctors are informed that I may require treatment, and there would be recombinant factor VIII available fro treatment at the hospital I was attending.
What kind of contact do you have with other young people with bleeding disorders?
I am in constant contact with my brother, who has moderate/severe Haemophilia A. Further, I have been closely involved with the Haemophilia Foundation Australia Youth Committee since its beginnings in 2003. Through this I have maintained close contacts with a number of Youth around Australia who suffer from a variety of bleeding disorders, including Haemophilia A, Haemophilia B, and Von Willebrand Disease. On the local level, there have been recent moves to establish contact between youth within Tasmania, to establish a supportive network for young people living with bleeding disorders. The focus is on the age group older than 18, where there is currently no Haemophilia nurse to help support them. The overall aim of any contact between young people with bleeding disorders is to help support each other through life changes, such as moving out of home, taking control of treatment, etc.
What would you like to know about other young people with bleeding disorders around the world?
Personally, I would be keen to see open discussions with youth around the world focused on how we can all help each other. Treatment possibilities are so varied throughout the world that it would be great to find out more about what youth are dealing with. Further, it would be good to hear about how people in other countries deal with issues such as moving out of home, taking control of their treatment, issues of disclosure of their condition to friends and partners, and if they face discrimination related to their bleeding disorder in the workforce. Overall, I would like to see more communication between people in different parts of the world, so that there is a greater awareness of what conditions are like in different parts of the world.
Facts about Australia
| Government form |
Democratic, federal-state system recognizing the British monarch as sovereign |
| Area |
7,617,930 sq km |
| Population |
20,264,082 (estimated) |
| GDP per capita (indication of the wealth generated per person) |
$32,000 |
| Internet users |
14 million |
(Flag, data and map from CIA World Factbook 2007)
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