Brian suffered from a terrible illness, hard for others to understand, relentless in its slow degeneration of his health. But, through the endless mornings of waking up in pain, he never stopped fighting. His winning spirit never failing, right until the end.
A serial entrepreneur he was never afraid of an opportunity and loved to find the next big deal. As with all great entrepreneurs; with the downs, came the ups and he saw success throughout his career. He enjoyed the trappings of his success in the form of fast cars, fast boats and fast bikes. Brian was a loving Husband and father and in later life became a doting grandfather. He was kind and generous and was an enormous influence on everyone around him.
He worked best under pressure and we always felt that the stress levels were part of his feeling unwell, never quite realising how ill he really was.
Brian was first diagnosed with scleroderma when he was in his early thirties. Initially, it was the bad circulation and pain in his fingers that took him to the GP. At that time he was also diagnosed with calcinosis and later with CREST syndrome.
Scleroderma can show itself in such different ways but Brian's first painful episodes where in fact from the calcinosis which resulted in crystals of calcium developing in his fingers and toes and then forcing their way to the surface and very painfully erupting out causing ulcers that wouldn't heal. Brian was referred to Dr Carole Black at the Royal Free hospital. When the calcinosis attacked his knees and prevented him from walking they decided to operate. At that time when he was in his forties he had an operation on his knee, which was successful and the symptoms regressed to his fingers and occasionally toes. Over the next 10 years the ulcerations became more and more painful and he suffered bouts of being extremely ill with fatigue, which we just put down to the stress and strains of everyday life. The symptoms of his disease were very uncomfortable and hard to deal with but we never really considered them life threatening and as the GP was really unable to help life just carried on.
By the time Brian was 55 the symptoms had really taken hold but we were only able to see the external signs. The nerves in his fingers were now so damaged that his finger had turned into claws that were bent and totally rigid. The restriction in his oesophagus, which he had always lived with, was getting worse to the point where it would go into spasm and be unable to eat for a couple of days. His teeth and gums deteriorated and his mouth became very tight and small. Externally his skin was covered in red patches and small shiny patches but for someone with a skin disease the skin on his body was always soft and taught he had no wrinkles.
The progression of the disease was very slow but by the time he got into his late fifties it was more than we could deal with by ourselves. After an extremely difficult period where the fatigue stopped Brian from walking further than 50 yards without resting we decided we needed help. After running a week of tests Papworth confirmed that Brian had Pulmonary hypertension and fibrosis of the lung both caused by the scleroderma and we were given the news that time was running out. We were told there was no cure, no operation but we could try some new drugs which could help slow the progression. He was put onto an Iloprost nebulizer which he inhaled 7 times per day which seemed to take up a lot of his time. Even the grandchildren called him Granddad Puff Puff. Together with a really high dose of Sidenafil, Warfarin to thin his blood and various other medicines for the side effects. We both thought the medication slowed down the decline but the decline continued.
The next 3 years were very difficult and Brian's health declined more and more. I was lucky enough to be able to give up work to care for him at home. We never gave up hoping, but Inevitably. the disease got the better of him and he passed away at home on December 9th 2012 at the age of 64.
We were extremely grateful to all the expert help we received from Doctors and nurses both in hospital and at home and the kindness we encountered along our journey. He was a very special person and a larger than life personality. His wonderful friends have set up this charity in his name and I only hope any money raised can help others suffer less.
From Janet Norris.
The Brian Norris Appeal Charity Number 286736
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