A.F McGuinness is an author, freelance editor and writing coach. Andrew has been a member of LDUK for a dozen years or more. His last novel, Anatomised, chronicles his harrowing Lyme journey. He wrote the book to raise greater awareness of Lyme disease, and it became recommended reading for doctors and consultants in the NHS. Andrew believes passionately in increasing the profile of the disease in the public domain, especially its physical and psychological impacts on patients and their carers. He has spoken about these during interviews for the BBC, SKY, ITN and ITV. As a patient ambassador, Andrew will continue this important work, hoping to effect positive change in both diagnosis and treatment.
Dan is 24 years old and works on his family farm in Blacko, Lancashire.
“I’m honoured to be an ambassador for LDUK. I’ve had Lyme disease for 3 years now after I was bitten by a tick while out shearing. I mistakenly thought it was ringworm and have experienced all sorts of symptoms ever since. Brain fog, fatigue and severe joint pain, leaving me unable to work for 18 months.Through treatment I’m gradually improving. I’m keen to help spread awareness on something people know little about!
Laura is a presenter, stand-up comedian and content creator and has worked on national televison and radio as well as interview at red carpet events. Laura has over a million followers on TikTok and in a change from her usual comedy content, made the film ‘Ticked off – Why I vanished’ in 2021 to help raise awareness of the impact of Lyme disease.
Laura was diagnosed with Lyme disease in 2019 and is currently three years into treatment. It took seven years of searching for a diagnosis to explain her symptoms of aches and pains, brain fog, fatigue, oedema and sore joints. Unfortunately Laura was misdiagnosed lots of times along the way before she was finally diagnosed with Lyme disease and multiple co-infections. Since treatment Laura has been able to start work again but at a much slower pace.
“I think there needs to be more awareness for Lyme disease sufferers especially in the UK and in the medical profession. I was told countless times by doctors that my symptoms were hormonal or it was implied I was “making a fuss”, and I’m really relieved now to have a diagnosis and make progress with my health. I still feel like it’s a journey of healing but I’m on the right track now, and I’m still learning all the time.
I hope one day to live a completely symptom-free life, get back to my career which I love and making upbeat and positive content.”
Roland is 57 years old, lives in Abbots Langley, Hertfordshire with wife Janet, who is a Clinical Psychologist, and their West Highland Terrier, Bubble. For 31 years he taught Religious Studies and English in secondary schools around the country, most recently at Berkhamsted School from 2005 – 2020 where he was also a Head of House.
Roland was diagnosed with Lyme disease in November 2020 but symptoms suggest that he had it for years. Roland has been receiving herbal treatment for almost a year and has been on antibiotics for four and a half months. Roland describes the impact the disease has had on his life and his efforts to raise awareness…
“Lyme Disease UK provides invaluable support for sufferers of both acute and late Lyme Disease. Not only has it put me in touch with people locally so that we have been able to form a support group for Beds, Bucks and Herts, but we are able to chat on the Facebook page, comparing experiences of symptoms, practitioners and treatment. I am grateful that I have now made new friends. The charity encouraged us to contact our local press in May 2023 for Lyme Awareness Month and my story was featured in the online version of the Hertfordshire Mercury as well as being rolled out to other local newspapers nationwide. I was privileged to be asked by the charity to contribute my story to a feature in British Vogue and, thanks to advice about how to write to my MP, I have been offered a meeting with him to discuss Lyme disease further.
When I’m well enough, I enjoy singing in my local choir, going to the gym and rowing at Broxbourne Rowing Club. I have been able to resume singing recently and am hopeful that I will be able to do more strenuous physical activity in the near future.”
Samantha’s youngest son contracted Lyme in 2013, while playing at a friend’s ninth birthday party in Windsor Great Park. Never having heard of Lyme disease at the time, the classic bullseye rash didn’t red flag a serious disease, and it took almost eighteen months to get diagnosed. He had a bone tumour removed from the site of the bite, and age ten became unable to read, struggled with speech and writing, and had a myriad of chronic pain and fatigue symptoms which left him housebound and unable to attend school.
Shortly after her son’s surgery, Samantha took both her sons for a short break away to The Highlands, where her eldest son also then contracted Lyme disease. Early symptoms of his included crippling pain in his spine and the soles of his feet, and all spinal discs have since shown herniation.
Both boys have had several diagnoses subsequent to contracting Lyme disease, including Langerhans Cell Histiocytosis (at the site of the tick bite), and Type 1 Diabetes.
Samantha has been an ambassador for Lyme Disease UK for more than five years, representing the charity at events in both Westminster and Holyrood, and in 2019 attended the NIHR Lyme and tick-borne disease workshop in Liverpool to speak on our behalf.
Campaigning for awareness and research into better diagnostic testing and
treatment has become a passion for Samantha, to try and stop this disease pulling the rug out from any other childhoods.
Sophie was bitten in 2008 in China, aged 14 when she was watching her friends at the Olympics. Her dream was to swim at the London 2012 Olympics and she was in the World Class programme. She was bitten by a tick while visiting pandas. Her health declined rapidly and doctors wanted to section her, labelling her with a mental disorder. Despite an increasing list of physical symptoms including blurred vision, food intolerances, joint pain, migraines and low blood pressure, she went undiagnosed for 9 years. Since receiving a diagnosis, Sophie has made it her mission to campaign and raise awareness about Lyme disease. Her work with LDUK motivates her to keep fighting and she is passionate about fundraising and making a difference.
Stephen and Angela Bullough
Stephen was a previous World, European and British martial arts champion and was/is a Karate 9th Dan. After a rash that was presumed ringworm and with a myriad of symptoms, Stephen entered the NHS system with each symptom split between various consultants.
After being given a disputed FND diagnosis by neurology, Stephen became seriously ill quickly. Sadly he lost his sight and the use of his legs in 2018, and despite having a private positive blood test from Germany, Stephen received no treatment from the NHS. With the help of LDUK and Professor Lambert, help was received and since 2018 his wife Angela has tirelessly pioneered to raise awareness, making it her mission to help Stephen and others with Lyme disease. Sadly, due to Stephen’s continued poor health and status seizures, Angela still has to battle the NHS on a regular basis due to their lack of knowledge and current non-existent treatment protocols for patients with chronic Lyme disease.
Tom has been suffering with Lyme disease since April 2022 when he was bitten by a tick in Tenerife, Canary Islands. After successfully receiving treatment via a private specialist following countless failed GP and hospital visits, Tom wants to spread awareness of symptoms to look for so that people don’t go through the same dilemma and suffer as he did.
“Lyme Disease is a complicated illness and in my case, symptoms were so sporadic that it was nearly impossible to identify a cause until a rash appeared and/or typical symptoms including facial palsy. There isn’t enough information out there on Lyme disease after the acute phase and that’s why I would like to share my story and help others.”