Findacure, now Beacon, was my metaphorical lighthouse in a stormy sea when I started advocating for people with Mal de Debarquement Syndrome (having MdDS embodies being in a stormy sea, when you’re not) in the UK. I was in terrible shape, physically and mentally, when I contacted the team there and, through taking part in the peer mentoring scheme and other initiatives, they helped me rebuild my confidence so I could move forward more effectively. For me, the most valuable aspect of working with Beacon and other rare conditions organizations is knowing ‘what good looks like’ in terms of patient engagement and empowerment.
“With the knowledge about MdDS being incomplete and the treatments relatively new, it is still a challenge for people here to get diagnosed and then access expert care. Unfortunately, the UK lags far behind other countries in terms of research and there are still people throughout the world who claim that MdDS doesn’t exist. Nonetheless, the awesome MdDS researchers have done amazing work, especially over the last decade. So I celebrate that, when I can, and work with them to facilitate further robust research.