It is with great happiness that I announce my health has improved considerably since my last post. This is the result of finally receiving an accurate diagnosis, surgery, and treatment for my ailments.
I was diagnosed with Joint Hypermobility Syndrome (JHS), a genetic condition whose name encapsulates the large group of as of yet undiscovered connective tissue disorders that fall outside of the Ehlers Danlos Syndrome (EDS) definitions.
Connective tissue disorders cause problems in collagen, which is present in most of (if not all) the organs in the human body. This, as you can imagine, causes a fairly wide array of problems.
For me this disorder manifests itself as a tall, narrow stature, long fingers that effortlessly twist themselves into unnaturally acrobatic positions, a shoulder that partially slips out from it's socket at inconvenient times, dysfunction of my autonomic nervous system, and velvety-soft abnormally-stretchy skin. The most disabling and dangerous of it's effects on me, however, were those associated with the increased laxity of the ligaments holding my spine together.
The structural integrity of most people's spines will never be compromised unless they are in a traumatic car accident or similar event. In those cases whiplash stretches the ligaments in the spine past what is natural and as a result the spine becomes dangerously loose. For myself, however, no precipitating event was necessary for my spine to start falling apart. Without my knowledge, my imperfect genes had inserted a glitch into the fabric of my body that made my eventual disability a foregone conclusion.
I'll spare my readers most of the details of my diagnosis process and instead provide a brief summary. I started seriously looking for answers at the age of 18 after I had just started college. The long process included the consultation of tens of doctors who practiced within the obscurity of hard-to-pronounce disciplines.
As my disease progressed there were glimmers of false hope in the form of incidental findings, like the discovery that I was in the early stages of venous thoracic outlet syndrome. There were also crushing blows delivered through the accusations of my supposed untruthfulness and exaggeration of my illness. I was even at one point diagnosed with a psychiatric condition known as conversion disorder.
Many of you who have combed through the troves of genealogical information available in ancestral medical records may recognize this disorder by another name. Many of our female predecessors were diagnosed with this same condition which before 1980 was called "hysteria". Given that the disorder's name was derived from the Greek root word "hystera", meaning uterus, it shouldn't come as a surprise that even in the modern age the disorder is diagnosed at a rate 2-5x higher in women than it is in men. It also shouldn't come as a surprise that it is often used as a way to dismiss mysterious neurological disorders in women.
Of course the accusation that I was suffering from conversion disorder was without merit. In reality it was found that rotation of my spine caused a visible, abnormal, horizontal deviation of my facet joints from one another. Basically my spine was partially dislocating every time I turned my head.
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| 3d CT Scan showing my unstable spine |
