What is EDS? Ehlers-Danlos Syndrome (EDS) and the complications of Chiari and Cranio-Cervical Instability (CCI) can be difficult to understand. Essentially, the defective collagen caused by the EDS puts an individual at a predisposition to develop a wide range of issues directly because of the faulty connective tissue. In CCI caused by EDS, the muscles and ligaments that should support the skull up on top of the spine are weak and lax. This causes hypermobility of the joint where the head joins the neck. This is a very delicate area and houses a number of vital structures. The excess movement of the skull compresses the brainstem into the top of the vertebrae. Depending on the individual, the severity of the disease can vary from mild to life-threatening.
What does this mean to Adam? As many of you know Adam has been suffering from severe vertigo, anxiety and excruciating pain over the last 3+ years. He has been to every kind of doctor from neurologist to naturopath. Only recently was there a possible diagnosis of EDS by a neurologist who referred Adam to a US doctor in Baltimore for treatment. It was this US doctor, one of only a handful of EDS specialists worldwide, who formally diagnosed Adam's condition as EDS Type 3(Hypermobility).
Through the multiple MRI and CAT Scans, Dr. H. was able to determine that the C1 and C2 vertebrae is Adam's neck were rotated in relation to his spine, in the process compressing and obstructing the jugular vein 95%. As if this weren't enough, as the EDS is destroying the cartilage in his spine. His spine and skull are slowing sinking around his spinal cord allowing it to protrude from the protection of his spine. In layman's terms, his spinal cord and brain stem are being battered around in his skull like a punching bag!!.
There is hope. Adam needs to have spinal fusion surgery(see above X-ray) to solidify and support his neck. He needs to have it very soon as the progression of his disease is increasing rapidly. Adam must wear a neck brace 90% of the time and is severely limited in his physical abilities. His doctor has recommended that he not lift anything and that includes his children. Imagine a father not being able to lift his children, play hockey with them or even change a diaper. As a result of this urgency, Adam has booked his surgery for December 2nd, 2013.
Without treatment, Adam could very well end up in a wheelchair and have severely limited mobility as well as suffering through excruciating pain. Throughout Adam's life he has been very giving of his time and himself. As his family and friends, we have always able to count on Adam for help in any situation. Now it is our chance to return the favour. Please donate so that we can send Adam to the US for treatment and give back some much needed quality of life and time to him and his family.
To learn more about EDS please visit the Wikipedia's EDS page. To read about Adam's story as written in the Ottawa Citizen click here.
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