A 5 Year Reflection

As Lyme Disease UK turns 5 this year, it only seems right to reflect on this period of time which spans half a decade and to take stock of what has developed organically over the years. I have to pinch myself every time I realise that a Facebook group which I started in my kitchen with fellow patient, Louise Dean, during one of the lowest points in my life, has now turned into the largest Lyme disease patient support network in the UK. Not only that, but LDUK is now a fully fledged non-profit organisation whose voice is getting louder. We now have a seat at the table during important conversations about how we can change the dire situation for Lyme disease patients in the UK.

We have weathered the storm and have transformed ourselves from a maligned patient group to a key stakeholder in numerous important processes. Instead of fighting to be heard, now we are invited to comment and instead of being unwelcome, our input now matters and makes a difference. This has marked a turning point for LDUK as more and more opportunities come our way, allowing us to share our collective story and to raise awareness of a disease which can affect anyone who enjoys the outdoors.

We have over 9500 members in our Online Community and we are all living proof that this is not a rare illness which can be easily cured.

Instead, it can be picked up in urban parks and gardens as well as in the countryside and if not treated promptly, it can cause devastating effects. The level of suffering experienced by members of our Online Community is hard to put into words. Many claim that if they were an animal, they would have been put down by now. This level of agony is totally inhumane and unacceptable and that is why we are so passionate about ensuring that people are aware of the dangers of tick bites and the importance of recognising symptoms and signs of Lyme disease early, so that prompt treatment can be administered. No-one should be left abandoned, misdiagnosed and untreated or left with a shell of their former life, unable to leave their bed, work or socialise.

Being invited to our first event marked the beginning of our fundraising efforts.

We were blown away by the support we received and from then on, it was clear that we needed to get our awareness materials into the hands of the public to inform them about Lyme disease, without putting them off enjoying the outdoors. We needed money to print leaflets, posters and banners to make an impression. It was clear that people felt passionate about belonging to LDUK’s Online Community and as we started to create more of a public image, volunteers offered to dedicate their precious time in order to help us to grow.

There was such a high demand for our leaflets that we decided to launch an annual awareness campaign which we named ‘Wake Up to Lyme’.

This campaign has been hugely successful over the past couple of years and we received generous sponsorship which enabled us to get as many awareness packs distributed across the nation as possible. Our leaflets and posters have been displayed in GP surgeries, vet clinics, pharmacies, schools, libraries, supermarkets, offices, recreational areas, bus stops and community notice boards. Our social media channels went wild as we took our campaign online and generous donations continued to flow in, allowing us to continue our work and fulfil our purpose.

LDUK would not be where it is today without its dedicated team of volunteers who feel like family.

The team works year-round and across different time zones to ensure that a safe space is created in our Online Community. We also ensure that we take up every opportunity we are given to comment on policy, present to and work with politicians to push for change, attend events and interview leading doctors around the world to bring knowledge to our members and beyond. We are driven and energised by the positive changes we witness and also by the kindness, compassion, support and generosity shown by our members in our Online Community, which is the lifeblood of LDUK.

I am so proud of everything LDUK is today and everything that this organisation has achieved to date.

I look forward to the next 5 years and I sincerely hope our work continues to make a difference in the world and that suffering is reduced as a result of our campaigning and support. Thank you to everyone who believes in us.

Natasha Metcalf (Co-Founder).