Lyme Letters Canada Campaign
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. The Lyme Letters Campaign was a clear sign of the resilience, strength and determination of Canadian Lyme sufferers - willing to take the time to document their story and be a part of meaningful, participatory change.
Reading all these letters and personal accounts has been a humbling experience for both Jennifer and I. We have shared tears and continue to 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.
At this time, the letter writing campaign is now closed.
Reading all these letters and personal accounts has been a humbling experience for both Jennifer and I. We have shared tears and continue to 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.
At this time, the letter writing campaign is now closed.
