John Caudwell is passionate about improving NHS care for Lyme disease patients. It’s a cause close to his heart, because Lyme has affected him and his family.
He founded the charity in 2016 and pays all the operating and administrative costs of Caudwell LymeCo.
This means that every penny donated to the charity by anyone other than Mr. Caudwell will be used exclusively for our charitable activities. This primarily includes funding research, raising awareness and providing information and advice to patients.
Below, he explains why he founded the charity.
“Late in 2015, several members of my family, including myself tested positive for Lyme disease. A few months on, additional members of my family also tested positive for the disease after suffering from a variety of symptoms, taking the total to fifteen.
As a result of the surprising positive results, I made it my mission and priority in life to research and look for the best treatments available to cure this terrible, relatively unknown disease, for both my family and I. Only when I started looking into the best treatments and cure for my family, constantly expanding my knowledge and understanding of the disease, did I discover that the medical care available for this condition, along with its various associated co-infections, is limited. This is due to a combination of a lack of knowledge and funding.
Lyme disease is which is primarily caused by tick bites and, if caught early enough, can be treated quickly and effectively with the appropriate antibiotics. However, my enquiries have revealed that there are many UK patients, like my family, who are left undiagnosed or misdiagnosed for many years, meaning that the disease develops complications. The treatment then becomes significantly more complex to cure and, therefore, also more expensive to treat.
Many patients travel abroad in order to see experienced doctors in countries such as Germany, or America where Lyme disease was first discovered, as they are struggling to find the expert help they so desperately need in the UK. I believe that many cases of Lyme disease go misdiagnosed and, therefore, are mistreated or they are simply not diagnosed at all.
As a sufferer myself and seeing how my family are suffering on a daily basis, I have become extremely passionate about all the other people who have been struck down by this abhorrent disease and have, therefore, decided to form a new charity, with the aim of giving people throughout the UK hope for a better future, by creating more awareness, working with the NHS and researching the causes, how it is transmitted and the impact the disease has on people, with the hope of finding a solution.
In addition to suffering from Lyme disease, patients can also develop co-infections as a result of the disease, or have co-existing complications. In order to recognise that Lyme disease is often complicated by these co-infections, I have coined the term “LymeCo.“
Since setting up the charity in 2016, John has campaigned and lobbied with the government, and given numerous TV and radio interviews to help raise awareness of Lyme disease.
Many people have contacted the charity to say that they only got diagnosed after hearing him speak about his experience of the illness. We are grateful that his support is able to make a positive impact on so many, and hope that the research that Caudwell LymeCo helps to fund has a further positive impact on thousands of people.
None of this would be possible without the support of our Founder and Chair.