As I filled in yet another hospital admission booklet and listed my twenty plus surgeries for eyes ears joints and the like I was reminded of the fact that until just recently I was unable to deal with the enormity of my world.
Until a label came along (Sticklers) I was just unable to believe that I had so much “bad luck”, that life had just dealt me an unfair hand.
Whilst a diagnosis and a label can be horrifying they can also be comforting.
With my cleft palette, 10 sets of grommets, glasses since two, high myopia, cataracts at 30, retinal detachments, colestoma in the ear and now deafness on the right side, with my knees and ankles being opened scraped and screwed and now my knee to be replaced (oh she is so young) and I think in quick succession the other - I have the answer as to” why”. Why all this happened to me. Why so many seemingly unrelated things happened to me. I have the answer.
Sticklers and PRS
Now I have to deal with the whole next chapter - having my sons tested, letting my siblings, nieces and nephews know to be aware. To own this syndrome and to ensure no one else in my family lives a life so devoid of answers and so full of physical and emotional torment from the never ending medical interventions and decreasing abilities.
Armed with knowledge some power over one’s self and the situation is possible.
Once I build the resilience I know I will reattain, once I have assisted and nurtured my family siblings and their families to this knowledge I will then bring it upon myself to educate the uneducated as to the notion of Sticklers Syndrome.
To inform the GPs, Physiotherapists, Teachers,OTs, Dentists, Orthodontists, orthopaedic Surgeons, Radiologists, Physicians, ENT surgeons, Ophthalmologists, Optometrists and any or all of the medical and health profession that had no answers for me for forty something years.
To teach them at age 12, 21, 32, 48 joint pain is serious and severe.
To teach them that yes cataracts are possible in a thirty year old.
To teach school teachers that some kids can’t run jump see swim hear properly are uncoordinated BUT still have value!
To tell the world there was a reason for my retinal detachment – I just didn’t know it til now.
To teach them that to talk to a 35 year old woman having her third knee surgery not to say you have the knees of a seventy year old.
To teach radiologists to be holistic.
To inform the medical profession that the person who identified and practically diagnoses my lifelong physical battle was ME and how lonely that can be.
To teach GPs to be on the lookout for “Syndromes” and not just each individual presenting item.
To reach each and every GP in Australia with the word “Sticklers”.
