Haemophilia Blog
Thanks very much for dropping by to our online discussion forum or blog on haemophilia (hemophilia). We would like to take this opportunity to invite you to share with us and fellow members of the haemophilia (hemophilia) community your experiences with the condition and attitudes toward treatment.
Indeed we are keen to hear from carers, friends and, of course, family members and get their perspective.
We are especially interested in the following questions:-
- What is your experience of living with a bleeding disorder, specifically haemophilia/hemophilia?
- Are other family members affected by haemophilia/hemophilia?
- How was the haemophilia/hemophilia diagnosed?
- How are you coping with the treatment for haemophilia/hemophilia? What improvements would you like to see?
- What do you think of the recent independent public enquiry launched by The Rt Hon Lord Archer of Sandwell QC which is examining how a generation of people with haemophilia/hemophilia was infected with HIV and/or hepatitis C and its consequences? While this mainly affects people in the UK all comments on this important question would be really useful to us.
- What do you think of gene therapy? Do you think it is a major milestone in that it could be a way to change the way someone’s body works so that the body can produce the missing clotting factors on its own?
Thanks
Belinda
