Lyme disease Awareness Month
May is Lyme Disease Awareness Month!
This is a great opportunity for Lyme patients, carers, patient advocates, associations, clinicians, and scientists to spread knowledge about how to prevent Lyme disease as well as other tick-borne diseases.
At Tezted, we support and work in conjunction with Lyme patients, associations, and experts on a global scale to disseminate scientific information, awareness, and good practice.
from our friend associations and patients
Infected ticks can transmit Lyme disease and associated infections. One bite is enough!
It is crucial to continue sharing the message of prevention globally.
On the occasion of Lyme Disease Awareness Month, our friend associations as well as patients shared their message to help us increase Lyme awareness and prevention.
Sharon Whiteman is the CEO of the Lyme Disease Association of Australia and a recovering patient herself. She is a tireless campaigner for justice for patients of Lyme disease and tick-borne diseases.
To know more about Sharon and LDAA visit:
Dominic D. Smith
Dominic D. Smith is a board member and Scientific Advisory Committee member of the Dutch Tick-Borne Diseases Foundation (www.tekenbeetziekten.nl); an ambassador of GLA Global Lyme Alliance (Netherlands) (www.globallymealliance.org); a representative of the LDAA Lyme Disease Association of Australia (www.lymedisease.org.au); and a Committee Member of the Lyme Global coalition (www.lyme.global).
"I hope that politicians and implementing bodies will pay more attention to patients suffering from Lyme disease and/or other tick-borne diseases. This is partly by working together with patient organisations, as politicians, executive bodies and health care providers, in order to come to better connecting up-to-date guidelines, for tests and treatments for Lyme disease and tick-borne diseases. Patients with Lyme disease and tick-borne diseases are entitled to access primary care and proper treatment including proper testing that is reimbursed by health insurers. My hope is that this will be realised in the future.
I have fought and am still fighting Lyme disease and tick-borne diseases myself. It's a hell you go through, where you hit walls and have to deal with misunderstanding, people and/or doctors saying "You don't look sick", and many setbacks either personal, losing friends and family, not being able to work anymore. Don't let yourself get too down, keep believing in yourself. Despite everything, try to stay positive and enjoy the little things. You are not the illness, you have an illness.
Lyme disease and tick-borne diseases are real, it is not a joke”.
Robert Mast is a member of the Dutch Lyme Association Lymevereniging.nl (www.lymevereniging.nl), a supporter of the Dutch Tick-Borne Diseases Foundation (www.tekenbeetziekten.nl), and a former Board Member of both specialising in IT support. Robert is also a Committee Member of the Lyme Global coalition (www.lyme.global).
Lyme patients face many challenges and struggle every day. Sometimes insured care is not enough for them to get better. I believe that is possible, if not to cure Lyme, at least to improve the quality of life of Lyme patients by using the right treatments. However, treatments have not yet been fully investigated or researched; there are not enough scientific studies establishing their efficacy, nor clear means to evaluate their outcomes.
Overall, there is a need for more discussion and debate on Lyme and other tick-borne diseases in the scientific and medical world. Lyme is too complex for simple research, and there is controversy impeding solid science as well. Medical approaches must be revised and updated to make them more appropriate for these complex diseases.
Patients are sick and do not have enough resources to make a change on their own. By joining and collaborating with other like-minded people, patients, experts, and associations, I am trying my best to help build a different vision and resources for Lyme patients. It is a great challenge, but there is hope.
"I have had Lyme disease and co-infections for decades. I see many bright spots in the future for Lyme disease patients. My hope is that researchers, doctors and other experts would combine their knowledge and skills for the benefit of patients. My message to Lyme disease patients is: Let your voice be heard, silence allows the injustices we face to continue".
Marjatta Valonen is the president of the Suomen Lyme Borrelioosi ry (Finnish Lyme Borreliosis Association www.borrelioosi.net) The association is also a member of the Lyme Global Coalition (www.lyme.global).
"In the future, I see patients empowered with knowledge and easy, inexpensive access to Lyme literate medical professionals. These doctors and nurses are free of harassment and able to practice medicine ethically with the best outcomes for the patient, regardless of bureaucracy.
I am grateful to all of the scientists who focus their work in this area, and to the medical professionals who continue to listen to their patients and push forward with successful treatments. With all of the extraordinary research happening right now, I have never been more hopeful for multiple pathways to complete healing."
Sarah Cormode Sarah Cormode is the host of "Looking at Lyme,” a podcast of the Canadian Lyme Disease Foundation. Sarah is a passionate educator and focuses her discussions to empower people with knowledge on their path to healing (www.lookingatlyme.ca).
"I speak on behalf of the Lyme Argentina Patient Group "Argentina Luchando Contra el Lyme & Co.": members of the Lyme Argentina Patient Group see the future as very difficult for Lyme patients. The Argentine health authorities refuse to acknowledge the existence of endemic cases. They deny the existence of Lyme Borreliosis in the country, despite the scientific evidence available and its presence in neighbouring countries. There are no preventative efforts, and doctors lack updated training and the necessary background knowledge to diagnose the disease, let alone treat it. The group of patients is in mourning for the death, last year, of the only two doctors who cared for them despite the rejection and mistreatment they received from the rest of the medical community.
However, I have two reasons to be optimistic. First, in recent years, I've witnessed the evolution of the scientific understanding of Lyme disease and EMCFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) everywhere in the world, as well as the unraveling of the plague of "bad science" around it. Second, in Argentina, scientists are actively working to officially establish that Lyme Borreliosis is present in the country.
The above-mentioned progress is mostly the result of patient actions. My advice is: Don't passively expect someone to come to save you. Participate in changing the situation in whatever way you can. Join forces and efforts and get organized. Trust yourself and your perception. Study and keep informed. Make your own decisions. Science does not belong to privileged ones. Always remember your right to make autonomous decisions, and for this, you must have knowledge.
The Lyme Argentina Patient group reminds us that we are not alone and that patient groups play a crucial role in the support, containment, and dissemination of knowledge."
Monica Carugatti is an Argentinian clinical psychologist and psychotherapist registered both in Argentina and Italy. She contracted Lyme disease at the age of 12 in a field 100 Km from Buenos Aires and has been studying Lyme and Myalgic Encephalomyelitis/CFS for 15 years.
Monica is a member of the CFSME Italian Association (http://www.stanchezzacronica.it/), the Lyme Italia e Coinfezioni Association (https://www.associazionelymeitalia.org/) and the Spanish Chronic Lyme Association ALCE (Asociación de Lyme crónico de España https://alcelyme.org/).
Monica is a representative of the Lyme Argentina Patient Group (Argentina Luchando Contra el Lyme & Co., https://www.facebook.com/argentinaluchandocontralyme/) and a member of the Lyme Global Coalition for patient rights (https://www.lyme.global/).
In 2021, Monica started the blog http://investigacionyetica.blogspot.com/ (Spanish) to help Argentine patients and professionals become Lyme literate.
"Lyme disease is found in over 80 countries worldwide and has been steadily increasing in recent years due to climate change and globalization. However, there is still little awareness and understanding of this condition and its serious consequences.
Lyme Disease Awareness Month is an excellent opportunity to provide information and raise awareness about these complex diseases. Knowledge of tick-borne diseases and the ability to recognize them are the most important variables in enabling early diagnosis and providing safe and effective therapy options. A prompt diagnosis is essential to get a favourable prognosis, while any delay may result in complications and impairment. For these reasons, clinicians and other health professionals need to be adequately trained and prepared on Lyme and tick-borne diseases. People need to be informed and aware of them as well: in Italy, citizens often are not aware of the risks deriving from a tick bite and that it can transmit serious diseases.
Patients implore the scientific world to enhance research and outline new therapeutic strategies. Diagnostic techniques and treatments are limited and under researched, and little is known about the mechanisms underlying the persistence of Lyme and co-infections after treatment. In May, the Lyme Italia e Coinfezioni Association invites all patients to talk about their condition and share their experiences so that we can better understand how much Lyme disease can limit and condition their life. A collective effort is necessary to improve the social, working, and school life of those who suffer from tick-borne diseases. This is the first step towards a social recognition of Lyme disease."
Daniela Colombo is the President of the @Lyme Italia e coinfezioni (Lyme Italia and co-infections Association (www.associazionelymeitalia.org) since its founding in 2015.
The Lyme Italia e coinfezioni Association is an Italian non-profit organization. Its goal is to build knowledge and spread awareness of #Lyme disease and other #tickbornediseases, prevent these conditions, and support patients and their families through the complex diagnostic and therapeutic process.
from our partner laboratories and clinics
Effective diagnostics and treatments are crucial to prevent Lyme disease and co-infections and improve patients' lives. On the occasion of Lyme Disease Awareness Month, our partner laboratories and clinics shared their message to help us increase Lyme awareness, prevention, and hope for Lyme patients.
ArminLabs is a laboratory specializing in diagnosing infections such as tick-borne diseases.
In this video, Dr Schwarzbach, ArminLabs' CEO, outlines the current situation regarding the diagnostic tools available for Lyme patients, as well as the future measures that science must take to improve the situation.
Dr Schwarzbach emphasizes the need for evidence-based research to get successful tests and therapies, and he encourages patients to be optimistic since improvements are achievable.
To know more about ArminLabs visit: www.arminlabs.com/en
Sanoviv Medical Institute
Sanoviv Medical Institute is a world-class healthcare facility specializing in chronic and degenerative diseases including Lyme Disease.
In this video, the multidisciplinary Sanoviv team of medical professionals, dietitians, and scientists illustrates the successful testing and treatments they use to assist people with Lyme disease. The Sanoviv team conveys a message of optimism and exhorts patients to have hope since changes are possible.
To know more about Sanoviv visit: www.sanoviv.com
Little Artists for Lyme Awareness
Children from around the world supported our May campaign by drawing Lyme Disease.
Parents, grandparents, or caregivers explained Lyme disease to their children so they could sketch what they learned and felt about Lyme. Thanks so much to all the little artists and their families for their precious contribution and support to increase Lyme disease awareness!
Martino, 4 yo, Switzerland
Olimpia, 8 yo, Switzerland
Luca, 9 yo, Italy
Ambra, 5 yo, Italy
Carlotta, 12 yo, Italy
Leonardo, 10 yo, Germany
Fiamma, 4 yo, Luxembourg
In collaboration with
Lyme Italia and Co-infections Association
Children in Italy helped us with our Lyme Disease Awareness Month campaign by drawing Lyme Disease. Thanks so much to all the families and little artists who contributed!
Riccardo, 6 yo
Elisa, 4 yo
Alcide, 9 yo
Victor, 10 yo
More to come!