Director
Anna Meriluoto
My name is Anna Meriluoto and I live in the Helsinki area in Finland with my beautiful 6-year-old daughter. I work as a college teacher with a background in event production, marketing and PR. I was diagnosed with Fabry disease in 1996 at the age of 28 along with my mother and my older brother. I consider myself to be the lucky one in the family since my Fabry symptoms are relatively mild and I have been able to lead a very normal life as a Fabry affected person: study, work and do sports. Therefore I am not receiving ERT unlike my mother (a heart patient) and brother (a kidney patient). I also feel very lucky because my daughter has not inherited this disease from me. I have been an active member of the Finnish Fabry Association since its establishment in 2003. In Finland we only have 27 diagnosed patients so our need for international relations and co-operation is enormous. I joined the FIN co-operation as the Finnish representative in Amsterdam in 2008. I see the role of FIN as a vital network between national patient organisations, pharmaceutical companies and other stakeholders. I feel honored to be a member of the FIN board along with my extremely competent colleagues from around the world. FIN has achieved great things already but there still remains a lot of work to do be done. Everyday life with a life-threating chronic disease is not easy. In addition to the physical problems the disease can be mentally very challenging, both to the Fabry affected as well as their family members. Because of this the support groups on both national and international level are of utmost importance. We all need to get in contact with other affected people in order to get peer support, information and help. Sharing our individual stories and experiences provides us all with the best possible non-medical remedy.
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