I pledged to grow a deadlocked testament to silent suffering, and then shave it off for charity and awareness.
To represent people who, on the inside carried unseen pain, whether from trauma or from illness.
To give a voice to those who suffer silently.
I did just that, but when my dreads were only half matured I was bedridden with a spinal injury.
They became dishevelled and unruly.
A true representation of my own condition, as well as my mission.
Through the course of many months my condition was investigated, I hit many dead ends and road blocks, but it was finally discovered that I had a hole in my dura (the sack that holds the fluid around the brain and spinal fluid.
Along the way it was also discovered that my incredible debilitating daily body pain was caused by the same root problem.
Faulty connective tissue!
Ehlers-Danlos syndrome
I have all my life experience muscular skeletal pain. I thought having pain somewhere in the body all the time was normal.
Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.
Running a three hundred kilometre event such as the one I did last year, is not recommended.
While many people experienced injuries, mine have proven to be longer lasting.
There are many different types of EDS and also other related connective tissue disorders.
Connective tissue makes up 90% of the body.
Therefore it can cause a variety of problems. Individuals can experience different symptoms, and involve multiple systems.
Some forms of EDS are quite rare.
It is considered a rare disease, but in truth it is more accurate described as misdiagnosed, misunderstood and mismanaged.
In my country there is no specific specialist.
In the past months I have consulted general practitioners, neurologists, endocrinologists, rheumatologists, gastroenterologists, geneticists, pain specialists, physiotherapists, dietetics and rehabilitation specialists.
How lucky am I to have access to these people.
But I digress. Back to my Do.
My team hit their target
This year's Bravehearts777 runner and good friend of mine Belinda, did the honours.
Today the team will gather for the last time ahead of this year's Bravehearts777 marathon series.
7 marathons 7 consecutive days 7 states.
EDS info source ehlers-danlos.com
