EDS Surgeries are Rare in Ontario
Jessica lives in Canada and has a difficult time getting the treatment and support she needs. Her husband Luke is leading the charge!
Background on my wife Jessica
My wife Jessica has Ehlers-Danlos Syndrome (EDS), a genetic disorder that also affects her brother Charlie and her mother Christine. People with EDS have a defect in their collagen, the main component of connective tissue that essentially acts as glue that holds their bodies together, providing support to the skin, muscles, joints, blood vessels and organs.
Jessica has been a student at Queen’s University, trying to complete her undergraduate degree in Health Studies and Psychology since 2007. Her declining health has made going to school difficult, and this past year she tried doing her schoolwork from home. Her debilitating symptoms however made it very difficult for her to keep up. Before her EDS progressed to affect her spine, she was active on campus as a Peer Health Educator and Peer Mentor – both positions she loved but had to give up when she became too sick to go to school.
Without proper connective tissue, the bodies of people with EDS are literally falling apart.
Jessica and Charlie both have spinal instability caused by EDS. Their faulty collagen has weakened the muscles, tendons, and ligaments in their spines so much that their heads are no longer stable on their bodies. Charlie had cranio-cervical instability, and spent a year of his life in bed, unable to sit or stand upright, and suffering from dozens of seizures each day caused by brainstem compression. After nearly a dozen doctors in Ontario refused to help Charlie (instead telling him to “get used to” living this way), Jessica started researching and found an EDS expert in Maryland. We arranged an appointment and travelled to see him. After viewing Charlie’s images, the surgeon immediately knew what Charlie’s issue were and decided that surgery was necessary. This surgeon in Maryland has performed surgery on nearly 800 EDS patients – more than any surgeon in the world. Charlie was able to get the life saving surgery he needed in Maryland on November 26, 2012, to stabilize his skull on his spine, and it was an amazing success. You can read about Charlie’s Fight to be Upright, as well as Jessica’s fight here: https://www.facebook.com/CharliesFightToBeUpright
Jessica’s condition has worsened over the past year from spinal instability, and it was determined that she would need 2 surgeries to stabilize her spine in her neck. She had her first surgery in Maryland on February 26th to stabilize her top two vertebrae. Before this surgery, she could have had a stroke by simply turning her head, as her top vertebrae was so unstable that it was compressing her spinal cord and vertebral arteries. Thankfully, the skilled surgeon in Maryland was able to fuse her vertebrae and now this will never be a problem for Jessica again.
Jessica now needs surgery to fuse her C5-C7 vertebrae, which are very unstable and damaging the nerves that control her arms and hands. This surgery will take place on May 28th. If this isn’t fixed soon, the nerve damage could be irreversible. Her left hand is curling in and she is losing the use of her fingers; and recently her right hand has begun to do the same. This is especially devastating to her since she used to love playing piano. With this surgery to fuse her C5-C7 vertebrae and subsequent rehabilitation, she can start to regain function in her arms and hands, and stop the progression of damage to her right hand.
Why can’t you have the surgeries done here in Canada?
These surgeries are not uncommon in Ontario, but having them performed on a patient with EDS is rare. People with EDS have VERY fragile tissues, so it’s imperative that when operating on an EDS patient (and especially operating in such a delicate area as the spine) that the neurosurgeon have expertise in doing this surgery on people with EDS. One wrong move could end in tragedy.
This expertise is not available in Canada.
The complications people with EDS face are far different than a person without EDS, and include things such as tissue fragility, bleeding issues, blood pressure problems, and trouble with anesthesia. This is why it is necessary to have a surgeon who has experience performing this surgery and dealing with any complications that may arise. The EDS expert we have found in the US has performed surgery on nearly 800 EDS patients, and we have had the unique opportunity through social media to talk to many of them and ask about their experiences. Everyone we speak to who has EDS and been treated by this neurosurgeon has had tremendous success.
After being dismissed and belittled by over a dozen specialists here in Ontario for nearly 6 years, we have run out of options. Jessica’s health has been steadily declining because of the issues in her spine, yet not one specialist here has shown concern or interest in helping her, often refusing to believe EDS causes any problems at all. Because of the systemic lack of awareness in the medical community about the issues that EDS can cause, people with EDS are not able to get the specialized care they need from doctors in Canada. Patients are being forced to go south of the border to have their EDS taken seriously and treated appropriately. In these situations, OHIP’s Out-of-Country Coverage Program, which was designed as a safety net for those with conditions that could not be treated in Canada, should fund the cost of the treatment in the US. However, in Jessica’s case (like many others with EDS in Canada), doctors here refuse to fill out the application to even apply for this coverage. Even if by some miracle Jessica could get the paperwork filled out, in the case of at least 4 other EDSers needing the same surgeries out of country, OHIP has refused to pay for their treatment in the US.
What we need
We are again left to pay out of pocket for her next surgery, which we simply cannot afford on our own. We have raised some money so far, but with only 15 days left until her surgery, and requiring a $28,000 down payment, we still need to come up with another $25,000.
Once the spine instability is fixed, Jessica’s pain will decrease dramatically and she can begin to enjoy life again. She will always have EDS, but the life-altering complications she faces right now will no longer be an issue; she can go on to live a long, normal, and happy life. She is also very close to finishing her degree at Queen’s that she started in 2007, with only one semester left to finish. She could potentially graduate in December 2013, if we can afford the tuition after this surgery. Once she graduates she wants to go on to do a degree in Occupational Therapy and in the future possibly do her Ph.D in Rehabilitation Therapy, so she can help others who are dealing with chronic conditions.
Jessica is determined to change things in Ontario for people with EDS. No one should have to suffer the way she and her brother has, simply trying to navigate our health care system. Once she is well again after this surgery, I know she will be the first one to step up and push for changes to how the medical community views and treats EDS patients. But first we have to get her better, then she can take on the world!
Other Ways You Can Help
May is EDS Awareness Month!”
Learn more about EDS and do what you can this month of May 2013 EDS Awareness Month. Tell someone about EDS today and Every Day.
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