Receiving a diagnosis of a rare condition is a major life changing event for families. Often, the first-time people encounter the term “thalassaemia” is during pregnancy or after the birth of their precious baby. Usually when families receive a diagnosis of their baby inheriting a severe form of thalassaemia it can shattered the world, they once thought they knew.
Thalassaemia and Sickle Cell Anaemia can be a difficult condition to live with. Whilst there is access to treatment options and monitoring in the NZ, the condition can still have an impact on everyday life. However, we are working hard and continue to work tirelessly to achieved some of standards and optimal care and treatment and prevention measures despite the many obstacles in our way. We also have one of the diverse cohort of people living with thalassaemia in the world! Our members and families living with Thalassaemia and Sickle Cell Anaemia, thier RESILIENCE is unmatched.
We know that there will always be some limitations in life, but we hope this page will educate, empower and inspire you to learn more about the condition and take control of your Thalassaemia and Sickle Cell Anaemia management.
Each section is written to cover important information that will help you make informed choices about your treatment options.
The sections are still a work in progress so please keep checking our website for more updates and if you have any suggestions on topics that should be covered, please email Sia at muskaancaretrustnz@gmail.com.
