Lyme Mom's invited to meet with Federal Health Minister - Jane Philpott
We are thrilled to announce that we have received an invitation to meet with Jane Philpott in Ottawa on August 22, 2017. We will be hand-delivering the letters and petition signatures and comments through the Lyme Letters Campaign and Ticking Lyme Bomb Petition.
We want to express our thankfulness to the over 2700 Canadians who took the time to share their personal Lyme letter (their story of struggle accessing care in Canada for Lyme disease), as well as supportive friends and family who also took the time to write and engage and speak out on behalf of a loved one who is suffering.
Reading all these letters and personal accounts has been a humbling experience for both Jennifer and I. We share tears, we break down, we shake our heads in disbelief as we read the same story - literally replicated over and over again - across Canada. As we read your journey, we step into your reality and struggles - because we understand, we have walked this same narrow path of marginalization. For many, dredging up the past was particularly painful and many wrote in their letters - 'please, please help me'. Several spoke of their wish to die because their suffering is too great to bear and that medically assisted suicide was a more available option then the treatment they desperately needed and wanted - and as we read these cries for help -we just want to reach out our hand, wipe your tears, hold your hand and say 'hold on, don't give up, keep fighting, you are not alone.'
The suffering, neglect, abuse, loneliness, marginalization and desperation amongst Lyme sufferers is clear, the lack of understanding and appropriate medical training with regards to this complex medical illness is clear as many have been denied care, even children presenting with bullseye rashes and being told their symptoms are viral. Those with chronic disseminated, late stage Lyme are often dismissed and refused - many share their experiences as being treated like a Leper, an untouchable, a malingerer.
There have been children writing letters, coloring pictures about their struggles or asking the Minister of Health to not turn away from the suffering of their parents. Mothers writing about their child and pleading that the Minister will open up her heart as a mother, so much fear, heartache and uncertainty woven into these letters. Seniors sharing that their retirement funds have been depleted and they are living off social assistance - all to access necessary care (outside of Canada). Marriages splitting up over the stress of a sick spouse, bank accounts depleted, houses being remortgaged - all in efforts to raise funds to access treatment outside of Canada. Friends writing and advocating on behalf of their friend who is suffering - because that person is not capable of putting pen to paper.
What we know to be true from these letters is this: there is a Lyme crisis all across Canada, which continues to grow. We also know that the patients who suffer - they are the experts. Advising people to wear white clothes and socks over their pants is just not enough to stop the rapid spread of this disease considering other modes of transmission - including transmission in-utero from mother to child.
As we meet with the Health Minister - we will be sharing with her from our hearts - and truly from your hearts. We will be speaking to the truth and reality of Canadians from every province and territory. We will do our very best to represent you and to ask for our Federal Government to engage at a level which is meaningful to those who suffer now - and that means that patient voices, patient advocates and care-givers, Lyme literate physicians, researchers and scientists - who do exist here in Canada - must be included in next steps - not just at a surface level, not paying lip-service - but meaningful, active participation. No more closed doors and empty words -it's time to come together, unite together and strategize with common goals - to protect, to educate, to provide appropriate and timely and patient focused care, to research meaningful questions, to open dialogue and have healthy debate among experts. We must move forward.
We believe that Canada can indeed to a world leader when it comes to Lyme Disease and we will hold onto that Hope.
Lyme disease is one of the fastest spreading infectious diseases in the world. It is carried by ticks, which are migrating all across Canada at an alarming speed. Canadian scientists predict that by the year 2020, 80% of the population in Eastern Canada (including Manitoba) will be living in a tick-populated area. Right now, the Government of Canada is considering a draft Action Plan to address Lyme disease that does not do enough to address the issues.
We need to unite together, keep momentum going and continue to have our voices heard and our concerns addressed. Important: Updates on Lyme Letters Canada can be obtained by:
Lyme Letters Updates tab above
complete Contact Form above and request to be added to Lyme Letters Canada list
Important - I (Sue Faber), Founder of Lyme Hope, Lyme Letters Campaign and one of the Lyme petition authors have no conflicts of interest. I receive no funding and have no ties to any pharmaceutical, insurance or medical industries although I am a nurse by profession. I am simply a mom who has chronic Lyme Disease, trying to effect change to help my family and other Canadians. More information on me can be found here: http://lymehope.weebly.com/why-i-am-coordinating-lyme-letters-canada.html
LymeHope (Please note, this group is separate from the Lyme Letters Campaign): We are a Canadian support and advocacy group for Canadian Lyme sufferers with a focus on families of children and youth with Lyme Disease. Our purpose is to unite, engage and empower Lyme sufferers adults and children alike with Lyme Disease and Tick-borne infections from across Canada. When we come together, our voices are amplified and our message is clear and strong. No one should have to fight for equitable treatment, care and compassion from their physicians. It is our strong belief that every Canadian affected by Lyme and associated Co-infections should be provided with timely access to expert consultations with Lyme-literate physicians and have access to appropriate and reliable testing, patient-centered treatment and individualized, holistic care-plans. Families should not have to seek help outside of Canada for medical care.
It is our collective goal to compile our individual stories, case-studies and clinical evidence and to share this valuable information in a proactive way - with our medical boards, Public Health, and scientific/research community as well as the general public and local, provincial and federal government. This focused information will be a powerful means to develop insight and awareness regarding pediatric Lyme presentations from acute to chronic infection and congenital/gestational Lyme.
Are you interested in being a part of our LymeHOPE movement? Please fill out the contact form above.