Ehlers Danlos Syndrome and access to necessary health care
176 Comments
A
Ann McCullough
6 years ago
Please review the neurosurgical needs of EDS patients. It may be a rare disease but EDS sufferers deserve the same consideration as other citizens.
F
Francesca Espinet
9 years ago
Quebec Health Care system needs to get up to date with the rest of the country, and Canada needs to do more for rare diseases in general. Both my daughter and I have been diagnosed with EDS, I have already had a Chiari Decompression surgery and back surgery and am still plagued with several other symptoms, yet the doctors are still ignoring these symptoms and not doing the necessary tests! It has been over 5 years that I am fighting the medical system and still waiting for proper tests and many of the health care professional either never heard of EDS, ignorant to it, or simply just don't know enough about it. We need to educate our health care professionals more and provide more services in the health care and public sectors......
P
Pauline Pita
9 years ago
This is the most outrageous thing I've read during this 2016 year. How can the ministry of health not push forward the help these people need to survive. I'm baffled!!
A
Ashok Kumar, Dr.
9 years ago
My daughter suffers from chronic back pain which has persisted following an accident, about 2 years, ago. Due to her spinal joint subluxations quite regularly she suffers severe nerve pain. Medical profession has done little or nothing to assist her with providing necessary care. Her joint subluxation falls in one of the 5 categories of EDS. Most Doctors have not heard of EDS. Education will be first step in appreciation of EDS. Next, experts in EDS need to be put in place urgently. OHIP budget keeps going up each year with so many unanswered issues. Dr. Hoskins needs a good plan not just on paper for political purposes but one that gets executed !
S
Sharon Guzak
9 years ago
Only one dr out of all the many, many specialists and GPs I've seen over the years has even heard of EDS, nevermind understood it. We need help.
N
Neslihan
9 years ago
I support eds
S
Siobhan Paquin
9 years ago
The neurosurgical needs of this population need to be appropriately met in keeping with the most up to date, international best practice standards for evaluation, diagnostics and management. This is key for the functionality and quality of life for patients who suffer with this severely disabling illness.
D
David and Karen Smith
9 years ago
We need to take care of our fellow Ontarians and ensure they get the healthcare that they deserve. Adena Gutstein should not be denied this life changing medical procedure. We need your help.
H
Howard Goldby
9 years ago
It's is a health care shame that EDS does not receive the level of attetion at MoH considering the level of suffering it causes.
C
Catherine Chamberlain
9 years ago
My 30-year-old daughter was diagnosed in Boston last year. He life has been ruined as a result of related and confidential circumstances which I am not st liberty to discuss.
S
Sandy Bell-Murray
9 years ago
We are one of the families who has had to self-fund urgent surgery out of province for our daughter after many frustrating attempts to obtain care in Ontario.
T
Theresa yore
9 years ago
I want a cure for EDS
G
Gary Cullen
9 years ago
Featured
I was 47 before I had a diagnosis of Ehlers Danlos Syndrome with symptoms starting at age 17, 30 years is too long. I think that alone speaks for a need for better knowledge of EDS in the medical establishment.
E
Erica Messing
9 years ago
Please review the mounting evidence that EDS is both more common than previously assumed, and less benign. EDS is not confined to "bendy joints" but instead is a multi-system disease with extra-articular sequelae. The health care system is already buckling under the weight of treating the symptoms of people who are as yet undiagnosed. Consider the cost-savings you could achieve with "an ounce of prevention" rather than the pound of cure or, worse yet, the complete lack of effective treatment at all.
N
Nell Mitchell
9 years ago
We need help
A
Anonymous
9 years ago
Featured
My daughter has EDS and we live in Victoria. We have to travel to Vancouver and Edmonton to see specialists who know about EDS. We need more awareness in the medical community and better access to treatment.
Please review the neurosurgical needs of EDS patients. It may be a rare disease but EDS sufferers deserve the same consideration as other citizens.
Quebec Health Care system needs to get up to date with the rest of the country, and Canada needs to do more for rare diseases in general. Both my daughter and I have been diagnosed with EDS, I have already had a Chiari Decompression surgery and back surgery and am still plagued with several other symptoms, yet the doctors are still ignoring these symptoms and not doing the necessary tests! It has been over 5 years that I am fighting the medical system and still waiting for proper tests and many of the health care professional either never heard of EDS, ignorant to it, or simply just don't know enough about it. We need to educate our health care professionals more and provide more services in the health care and public sectors......
This is the most outrageous thing I've read during this 2016 year. How can the ministry of health not push forward the help these people need to survive. I'm baffled!!
My daughter suffers from chronic back pain which has persisted following an accident, about 2 years, ago. Due to her spinal joint subluxations quite regularly she suffers severe nerve pain. Medical profession has done little or nothing to assist her with providing necessary care. Her joint subluxation falls in one of the 5 categories of EDS. Most Doctors have not heard of EDS. Education will be first step in appreciation of EDS. Next, experts in EDS need to be put in place urgently. OHIP budget keeps going up each year with so many unanswered issues. Dr. Hoskins needs a good plan not just on paper for political purposes but one that gets executed !
Only one dr out of all the many, many specialists and GPs I've seen over the years has even heard of EDS, nevermind understood it. We need help.
I support eds
The neurosurgical needs of this population need to be appropriately met in keeping with the most up to date, international best practice standards for evaluation, diagnostics and management. This is key for the functionality and quality of life for patients who suffer with this severely disabling illness.
We need to take care of our fellow Ontarians and ensure they get the healthcare that they deserve. Adena Gutstein should not be denied this life changing medical procedure. We need your help.
It's is a health care shame that EDS does not receive the level of attetion at MoH considering the level of suffering it causes.
My 30-year-old daughter was diagnosed in Boston last year. He life has been ruined as a result of related and confidential circumstances which I am not st liberty to discuss.
We are one of the families who has had to self-fund urgent surgery out of province for our daughter after many frustrating attempts to obtain care in Ontario.
I want a cure for EDS
I was 47 before I had a diagnosis of Ehlers Danlos Syndrome with symptoms starting at age 17, 30 years is too long. I think that alone speaks for a need for better knowledge of EDS in the medical establishment.
Please review the mounting evidence that EDS is both more common than previously assumed, and less benign. EDS is not confined to "bendy joints" but instead is a multi-system disease with extra-articular sequelae. The health care system is already buckling under the weight of treating the symptoms of people who are as yet undiagnosed. Consider the cost-savings you could achieve with "an ounce of prevention" rather than the pound of cure or, worse yet, the complete lack of effective treatment at all.
We need help
My daughter has EDS and we live in Victoria. We have to travel to Vancouver and Edmonton to see specialists who know about EDS. We need more awareness in the medical community and better access to treatment.
[email protected]
My young neice is diagnosed with EDS and has suffered for years. This meds to be researched more and taken seriously
This needs to be addressed as it is affecting one of my dear friends child.
Fight the good fight. All the best