Getting the diagnosis of having Amyloidosis, a life-threatening disease is a major shock to anyone affected. This is all the more true when this disease is very rare and therefore little researched. And therefore no or only little proven therapies exist.
Amyloidosis is one such disorder. It occurs in various forms and doctors, researchers and pharmaceutical companies are making great efforts to overcome this disease or at least to extend life with amyloidosis and make it worth living. This has led to considerable success in recent years. To everyone's delight, there are a number of treatment options that could possibly even lead to a cure.
For the successful treatment, the early detection - as with all life-threatening diseases - important! The time until amyloidosis is detected is still over 5 years on average due to its difficult diagnostics! The self-help group "Living with Amyloidosis - Amyloidosis Austria" has set itself the goal of making a significant contribution to the earliest possible diagnosis of the disease.
The therapies mentioned are still very expensive because of the small number of patients and therefore hardly available. Our vision is to ensure the best possible treatment for all those affected. This requires the support of as many stakeholders as possible, so that we can emphatically express our concerns at all relevant levels.
Many amyloidosis patients do not yet know or are not fully aware of what they can do to help them recover or support themselves. Our self-help group wants to contribute to the dissemination of the necessary knowledge to a high degree.
The research on the different forms of the disease is still in its infancy. In our own interest, we should work to ensure that rapid advances in treatment are made in the future through active participation in our recovery and participation in clinical trials.
Then, hopefully, we will experience the time when we are not living with amyloidosis, but could be cured of this disease.