The #RAREvolutionary Polly Moyer has shared her experience with the RE(ACT) Community. We are happy to invite you to read the following interesting interview.
(Polly sharing a laugh with her Findacure mentor. Photography credit: Barbara Asboth, courtesy of Findacure)
1) Hi Polly, nice to meet you and thank you for accepting our #RARETalk invitation. Can you tell us something about you?
Thank you for inviting me! I've followed the #RareTalk series with interest and it's an honour to be part of it. I'm the co-founder of a small patient group: Action for MdDS UK. Our main aim is to ensure that the treatment protocols developed in the USA and elsewhere become available in the UK. I also campaign for rare diseases generally, whenever possible.
2) June is the awareness raising month for Mal de Debarquement Syndrome (MdDS). In your opinion, which are the most important activities to spread the word about this invisible disability?
MdDS patients in the UK have some fabulous advocates within the medical profession (dubbed 'the rock docs') who are doing all they can to raise awareness amongst their colleagues. This is crucial as it will help reduce diagnostic delay and ensure that people are not directed towards inappropriate treatment. One of the main tasks here is to dispel the myth that MdDS is only triggered by cruises and only affects women. Meanwhile several of the researchers have told me that raising awareness amongst our families and friends is also vital. So when I am offered opportunities to write about MdDS I try to include some general information about how they can support people who have to co-exist with MdDS.
3)"We don’t want to give up, and we don’t want our doctors to give up either."- Sometimes ago, you wrote an article for the BMJ offering encouragement for doctors feeling defeated by the complexity of Rare diseases. Can you tell us something more?
Many people with rare conditions have told me that once they managed to get their diagnosis, their primary care doctors were not able to do anything more for them. This can leave people with many unanswered questions and a sense of feeling abandoned. They then have to try to navigate their way through complex health care systems without appropriate support. My new primary care doctor is excellent, so I wanted to demonstrate that a doctor who won't give up is a vital part of any rare disease patient's tool kit. My Dad was a General Practitioner so I have great empathy for all primary care doctors and wanted them to know how valuable they can be to their 'rare' patients.
4)How do you discover the RE(ACT) Community?
When I was struggling to get support from my previous doctor, my sister sent me the UK Rare Diseases Strategy in the hopes that it would give him some guidance. Although that plan didn't work out, I realised there was lots of other support available for people with rare conditions from organisations such as Findacure and the RE(ACT) Community. Many people with MdDS have difficulty using computers but nonetheless we unlocked our 'disease dossier' fairly quickly and MdDS is the 'most followed' condition on this site.
5) In which way can digital media help you and the other #RAREvolutionary patients to push the research?
As far as MdDS is concerned, some of the recent research is very exciting as it is based on research done by NASA and has resulted in a treatment protocol that uses opto-kinetic stimulation. I hope that digital platforms that help us to celebrate the work of our researchers will provide an excellent way to encourage further research. Platforms that empower patients and researchers to work together are also very valuable.
6) Can you share three challenges you have overcome from your daily life with MdDS?
By far my biggest challenge was finding a good primary care doctor, which took many years. She knows she can't cure me, she knows she can't reassure me and she knows she can't answer all my questions. But she's helped me to keep searching for answers and supports my efforts to get treatment available in the UK. She's also helped me deal with the negative psychological impact of having had very poor treatment in the past. For many people with MdDS, the terrible cog-fog that can accompany it is one of our greatest daily challenges. I've learnt to laugh at myself when I get words muddled, forget things, get lost in familiar places etc. Reading a book feels like a major achievement, as does cooking a meal. Celebrating these small victories helps me fight off the situational anxiety and depression that can be co-morbid features of any chronic condition. Asking for help and support was another big challenge for me. I was brought up to be independent and of service to others. So finding myself in a position where I needed to ask my family for help felt very uncomfortable. However the financial and emotional support they provide empowers me to be an advocate for others. This, in turn, helps me feel that my life is worthwhile, after all. Again, many thanks for inviting me to take part in the #RARETalk series and for asking such insightful questions.