Through their awareness project somehowdeaf and a fundraising campaign (Spendenaktion) in support of a genetics study, Greta and Larissa are making a valuable contribution to knowledge, research and hope. Their commitment impressively demonstrates that those affected are experts in their own right and important pioneers for a better future in the care of rare diseases.
Dear Greta and Larissa, We are very impressed by your commitment. What motivated you to set up SomehowDeaf and make it public?
We were motivated by the desire to raise awareness of neurofibromatosis type 2 (NF2) and give patients a voice. We wanted to create a space where they feel understood and can network. Through sharing our personal experiences, we hope to raise awareness of this rare disease and encourage others.
You both live with a rare disease that many people know little about. What do you think are the biggest challenges of everyday life with NF2 that more people should be aware of?
One of the biggest challenges is the unpredictability of the disease and having to constantly adapt to new health situations. There are also everyday barriers, such as communication difficulties and a lack of accessibility in public spaces and digital media.
You have launched a fundraising campaign in support of an important genetics study. Could you tell us what you hope to gain from the research, both personally and for other patients?
We would like to support the research at the University Hospital of Tübingen, which aims to enable new therapeutic approaches, with the ultimate goal of finding a cure or, at the very least, improving treatment options. For us personally, this means hoping for a life with fewer restrictions and more security. We hope that other patients will not have to face the same challenges that we did, and that faster diagnoses will be possible in the future.
If you could ask the public, doctors or political decision-makers for something, what would it be? What would really make a difference for people living with NF2?
We would like to see more education and awareness-raising around rare diseases such as NF2. We need a healthcare system that leaves room for ‘rare cases’ and is not just geared towards common diagnoses. We hope for more understanding and support from the public in everyday life, particularly with regard to barrier-free communication and infrastructure. Doctors should receive better training in rare diseases to enable them to make early diagnoses and initiate appropriate treatment. We expect politicians to invest in targeted research programmes and funding initiatives that facilitate access to innovative therapies. After all, rare diseases are no less important just because they affect fewer people.
Thank you for the interesting insights, and all the best!
Find out more at www.somehowdeaf.de
