St Mary’s Calne and the wider school Community have been raising money and awareness for Lyme Disease UK or LDUK, which has been chosen charity for this year’s Charity Week. LDUK was founded in 2013 by Lyme patients Louise Dean and Natasha Metcalf, who both struggled with the lack of support and limited available information at the time of their diagnoses. They set up the charity, which began as a Facebook Community, aiming to support patients with Lyme disease and associated illnesses, as well as educating the public about the often-misunderstood disease. LDUK also has an important personal connection to the school; alumna Yasmin Watling, who left in 2017, was bitten by a tick aged 19 and has struggled with a chronic form of the disease ever since. In December 2024, Yasmin’s Dad, Mr Watling and three others will take on the race branded the ‘World’s Toughest Row’, across the Atlantic from the Canary Islands to Antigua in aid of Lyme Disease UK. The charity does so much great work to raise awareness about Lyme disease which has often been misunderstood in the medical community in the UK.
Members of the student Charity Steering Group had the pleasure of interviewing Natasha Metcalf and members of the Watling family, (Yasmin was unfortunately too poorly to travel due to her condition). The following article includes some of the highlights from our discussion.
The biggest misconception of Lyme disease is that it is ‘hard to catch and easy to cure’, said Natasha Metcalf. Natasha referred to the idea of ‘hotspots’ that many people believe infected ticks can only be found in places like ‘the highlands of Scotland or on the South Downs, but we know Lyme disease has been found in London parks, in fact there is evidence of it being present in every county in the UK.’ She describes Lyme disease as almost two illnesses explaining that if you catch it early and treat it you can then go on and never think much about it, but it’s when it’s left, then complications happen. ‘Chronic Lyme disease’ is not a medically accepted term in the UK, however, independent Lyme treating practitioners use it to describe long-term symptoms and complications associated with the disease, which are often the result of it being left untreated. Lyme disease can lead to debilitating fatigue and brain fog, resulting in memory loss, mental health issues, muscular pain, heart problems and can affect the nervous system.
We discussed the lack of treatment options for those weren’t diagnosed and treated early and who suffer from late-stage Lyme disease as well as the severe lack of support by the NHS for this condition. Yasmin is currently administrating treatment herself, under the prescription of an American doctor, ‘we went to America twice last year’ says Mr Watling, ‘and we feel fortunate that we are able to do that to support Yasmin, but 99% of people are unable to access this support.’
‘It is all encompassing,’ Natasha told us, ‘it’s surreal having to navigate treatment with a doctor abroad.’ As well as having to conduct your own intravenous therapy this treatment, which is so crucial to helping those suffering from this overwhelming and debilitating condition, it is only provided by ‘a small handful of private doctors.’ Additionally, treatment can cost up to roughly £100,000.
We also discussed the limitations of testing for Lyme disease. Mr Watling told us how ‘the test for Lyme disease is notoriously poor and, without the presence of the rash, the blood test given isn’t always accurate.’ In fact, accuracy is only about 50%. The reason for this is that Lyme disease was only really discovered in the 70s, so treatment is still relatively new and a new test would require serious funding. Natasha experienced periods of relapsing and remitting illness, which interrupted her life and education frequently for 12 years before receiving a diagnosis. ‘Once you’ve got the test you can then develop better treatment protocols, right now it is hard to develop a good treatment protocol when you don’t know who has got it.’ Another issue is that there is no there is no test for cure, you can’t see if it has been eradicated and thus whether treatment has been successful.
In general, not a lot of money has been poured into research into Lyme disease, and that’s part of their mission, not to scare anybody but to say we need more attention, according to Natasha, ‘Lyme disease is not just some rare genetic condition, everyone is at risk’.
LDUK has achieved so many great things over its lifetime, including playing a part in creating Lyme disease guidelines followed by the NHS which now includes a second course of antibiotics for people still experiencing symptoms after a first course. The guideline highlights the fact that the Erythema Migrans (EM) rash is diagnostic of Lyme disease, without the need for a blood test.’ Importantly the charity has noticed it has begun to be taken more seriously, as they are now being invited to medical conferences and have created educational animations to display in pharmacies. May is also Lyme disease awareness month and Natasha explained that the charity hopes to have an even bigger reach this year with their annual awareness campaign ‘Wake Up to Lyme’ www.lymediseaseuk.com
We had such a wonderful time talking with Natasha Metcalf, Azar, John and Ariana Watling and it is so apparent how much work still needs to be done regarding support for Lyme disease patients as well as general awareness about the risks of ticks and infected ticks. We look forward to welcoming Natasha back to St Mary’s on Founders’ Day when she will address the school community. Please donate to support the Charity LDUK via our Enthuse link below.
https://lymediseaseuk.enthuse.com/pf/stmaryscalnecharityweek2024
Claire D and Mary G, LVI
