Lyme Disease UK is a registered charity (1182212) which exists to support people who are living with the devastating effects of Lyme disease and looking for support and guidance. We work hard to provide support and raise awareness of Lyme disease amongst the UK public and healthcare systems. We value our sense of community and encourage anyone who is struggling to join our Online Community via Facebook (closed group – please request to join), where you will meet some of the kindest and most knowledgeable people! Throughout the year, the LDUK team attends public events, meetings and conferences, liaises with other Lyme disease organisations, and campaigns for an increase in knowledge and advancements in patient care.
“The most inspiring aspect of Lyme Disease UK is the coming together of some of the sickest people in the world and their loved ones in order to support each other, to build friendships, to devote time to raising awareness, to protest, to start up charities, to give patients a voice and to foster hope in the face of so much suffering, adversity and prejudice.” Natasha Metcalf, LDUK Co-Founder.
LDUK was founded in 2013 by Lyme patients Louise Dean and Natasha Metcalf. They both struggled with a lack of support and available information at the time of their diagnoses and recognised the need for a UK based support network to help patients navigate their way through the complexities and controversies surrounding Lyme disease and associated illnesses. Louise and Natasha ran LDUK together for three years before expanding the team.
LDUK are stakeholders in the NICE Lyme disease guideline writing process and we participated in the Independent Government Reviews on Lyme disease. Many of our group members campaign hard throughout the year to raise awareness of Lyme disease and fundraise for a better future. We attend events and conferences and in May 2017, we launched our first national Wake Up to Lyme campaign, sending out awareness packs all over the country so that our literature could be displayed in GP surgeries, vet clinics, pharmacies, libraries, schools and recreational areas. This is now an annual campaign. LDUK is also involved in the All-Party Parliamentary Group for Lyme disease involving politicians and other stakeholder groups who are interested in pushing for change. Our group project page details group members’ activities and achievements.
“The stories of personal sacrifice soon started to emerge in our group. We learnt about people re-mortgaging their houses and selling everything in order to pay for private treatment. We learnt about whole families being infected and about people having to fundraise in order to even get a private test as they were being denied NHS testing by their GPs. We learnt about people being belittled and laughed at by doctors. Lyme disease is more than just an epidemic…it is a humanitarian crisis.” – Natasha Metcalf, LDUK Co-Founder.
The LDUK Team Trustees
We also have a team of Lyme Disease UK Patient Ambassadors.