For over 25 years the society has provided my family with support. From my brother’s diagnosis of haemophilia A and Von Willebrand disease as a toddler, through to learning I am a carrier of haemophilia A myself, the society has always been there for my family with timely information, family weekends, focus groups and a friendly listening ear on the end of the phone.
I remember the daunting diagnosis when my brother was young, and it was only through the support from the society that my parents and in turn myself have not only learned this disease inside and out but we are confident to assist others going through the same experiences.
The Society gave us the tools and confidence to deal with our conditions throughout the years. My brother and I remember with fondness the family weekends, camps and kids outings with other haemophiliacs; it helped us feel like we’re not alone in our experiences.
When my own son was diagnosed with haemophilia A at birth, although I was devastated I was empowered that I knew what I was doing and that the support would be around us as a family. The newly diagnosed weekend we attended this year was excellent and we are all so looking forward to the annual general meeting in November.
Keep doing what you do haemophilia society!! We will always need you!