Wednesday, May 24, 2017

Case Study #41 - Neil Cycling the Course

Prep Sketch

As a baby Neil Frazer had multiple café au lait spots (birthmarks) that were a concern and on diagnosis proved to be Neurofibromatosis (NF). There were other subtle indications of NF – large head and arm bones that do not extend in the usual manner. None of which were of much concern as a young child. Not much was known about NF then. He was always the smallest kid for his age and and it made him aware of being different or - An Other. Neil had a very delayed puberty which required hormone therapy. Even with the hormone therapy he left high school looking like any other small 12-year-old boy. NF did not really affect his ability to have friends or participate in a wide range of activities. He did graduate high school with a university entrance. At 18 he shot up and grew about half a meter and put on 14kgs. NF is a slow burner and the conditions are progressive. NF has many symptoms or aspects of which he has dodged some – luckily, not being intellectually challenged. Others manifestations were apparent, during his twenties, the café au lait spots faded which was a small mercy because often people thought he was dirty – it’s the small cruelties that hurt. But as the marks faded the fibromas/lumps/tumours appeared and grew and become a nuisance. Neil had the first of the tumors removed in his early twenties. These tumors were on his skull, were in awkward (high wear) positions or unsightly. He was still living a normal happy and well-adjusted life but fretting about his appearance did take up a large part of his mental resources. The staring and rude comments were becoming more frequent. I become an academic exercise and a medical curiosity – my picture was taken by Dermatologists, Neurologists, Endocrinologists, GP’s, and more My Dentist even took a picture.

To say the knowledge about Neurofibromatosis was skimpy would be a compliment. Neil could not get good advice and plastic surgeons often botched cutting off fibromas. He was living a normal existence and was at university and was beginning to establish himself as an endurance athlete and had a wide and solid circle of friends and training buddies. He took his time in graduating but that had more to do with being distracted by running, cycling and paddling around the Indian Ocean. He was happy, if self-sufficient and independent. Neil remains a happy solitary but engaging. He did have girlfriends and normal relationships but was very aware and self-conscious especially of his torso and back which remain his most affected areas. He did marry in my twenties but that marriage was very short lived and a primary reason for the divorce was the NF and the possible impact on the future and any possible children. It was sad but ultimately a disruption that led to better wife and a more balanced perspective of NF and life. 

Neil has long since loved being underestimated and proving his abilities to doubters. In his early 30’s with a brilliant new wife in tow – he left SA to work in the UK. It was here he met Professor Ferner, the head of Neurology at Guys, St Marks in London. Prof Ferner made him feel understood (Psychologically more than anything else). The explosion of knowledge was very rewarding. Prof Ferner remains a leading NF authority. Plus, she was kind and treated me like an intellectually sound individual. THE NHS were brilliant in managing his NF although the knowledge and experience is still very limited and even their surgeons or specialists were hesitant to operate or “cut” because they had no experience – Neil remains a medical curiosity to this day. By now he tell doctors stuff they are guessing. 

Neil returned to South Africa in 2002 – with his wife and 2 beautiful kids and was ready for the challenges his country likes to pose. This is when the management of his NF become more complex MRI’s, bones, gastro, and lots of cutting. He had found some great doctors, Dr Richard Brink his physician does a brilliant job cutting of fibromas. He recently had several cut off his face and the scars are almost invisible. Dr Lia Mavroard is a fantastic neurologist. 

They say "NF warrior" and they are right – it's warrior class and he is a 52-year-old last man standing gladiator. It’s about confidence and a never ever say die attitude. Luck is a critical factor and his primary luck is having an immense support structure built of a wife, family and a select group of friends. It’s is his impenetrable shield as a warrior – they fight for me, defend me and never let me believe that I am anything but vastly superior. It is vital as an NF sufferer to have a support structure – it is the sacred foundation upon which NF can be dealt with for a lifetime. You need the experts, The Prof Ferner, The Richard Brinks and the Lea Movroardis, Dr Barrows these and other kind and committed medical practioners. The number of times my results have been sent to the medical panel or the weekly discussion board are too frequent to mention. But there have been some unkind, uncaring and stupid doctors. You need love, a wife, special kids, a family, friends and reading, traveling and maybe a hobby. Cycling is his perpetual mistress and largely carved his identity into the bark of the world. It is the pure joy of moving fast and looking like everyone else because at speed we are all blurred. It’s because it’s outdoors. The sheer pleasure of pitting a racing heart against a raging hill is an undying love. 

Neil also enjoys being with like-minded people and watching the sunrise start the day. He was a sponsored athlete in a sponsored car. He has done thousands of races including 7 Cape Epics. He has been to the 4 corners of the world on his bike and he doesn't see himself stopping anytime soon. He has created mountain bike clubs, written for magazines and enjoys some infamy in the cycling community. It proved that he will not be limited. 

In 2009, Neil had a horrific crash and rolled his sponsored Fortuner 6 times and obliterated everything in the car including himself. He escaped by a miracle of athletic conditioning and luck. He was really fortunate (pun) to survive and his ability to fight against NF helped his fight against dying from injuries and infection. In the hospital, Angels came to collect him and it was an attractive offer with a bonus plan and a nice house but I said I had things to do and promises to keep before he died. One was to raise his children, another was to ride with a dying friend across South Africa in the Jozi2C and another is to help others combat NF. A friend said, “God wants you to do stuff, don’t waste the chance”. Today I start by being an NF fighter.

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