A Wet, Grey Summer is Just the Job Andy Macmillan Suffers From the Baffling Illness Sarcoidosis, Which is Made Worse By Sunlight
By Sarah Howden
THERE’S no escaping the fact that summer has been a washout. Forget the winter blues, with sunshine at an all-time low this year some experts claim it’s harming our health.
Many of us are said to be suffering from a deficiency of vitamin D, which is produced naturally when the body is exposed to natural sunlight.
In fact, with exposure to less than an average of 20 minutes sunlight a day, the average Scot has vitamin D levels four times lower than our southern neighbours.
However, while the majority of us may well be suffering, there are some out there who are reaping the health rewards of a bleak summer.
This summer has been a good one for 29-year-old Andy Macmillan. A great one, in fact. For even if the rest of the country basks in sunshine, the senior audio visual technician from Slateford has to avoid it.
“I’ve got sarcoidosis,” he explains. “It’s basically an auto immune disease where the body attacks itself. I don’t know how I got it, and they don’t know what causes it. It is a bit of a lottery really when it comes down to who will fall prey to it.”
It is a condition which affects around 500 Scots every year. Inflammation often appears on parts of the body, with the most commonly affected areas being the lungs, skin, eyes and lymph nodes.
While there is no cure for the disease, painkillers and steroids are commonly used, as well as lifestyle and dietary changes. And a reduction of vitamin D is just one of them. In severe cases it can develop into a debilitating chronic condition that may lead to death.
“Sarcoidosis makes the body produce its own vitamin D, which also increases the likelihood of kidney stones for me if I have too much of it,” explains Andy. “That, vitamin C and calcium isn’t good for me – which is ironic as it’s so good for everyone else. Vitamin C affects how you absorb vitamin D, and vitamin D is obviously bad for me too. So yeah, this summer has been a good one for me.
“It’s a case of sunscreen in the sun . . . when we do get it. And I don’t overindulge in things like orange juice, which contains lots of vitamin D.”
Andy was diagnosed with the disease back in 2007 after he developed a persistent cough. After a few weeks his ankles began to swell and lesions appeared on his shins. Then, his joints became stiff and even bending down to pick up his six-month-old daughter, Imogen, was almost impossible.
“Initially I didn’t think much of the cough as it would disappear and then come back, but when I developed the rest I eventually went to see the doctor,” he recalls. “It was a locum who saw me and as she specialised in lung conditions, immediately they picked up on something.
“She examined me and ear-marked sarcoidosis there and then, but sent me to get a chest X-ray as they wanted to look at my lymph nodes.”
Finally, to confirm the diagnosis, doctors carried out a lung biopsy.
Andy continues: “When they confirmed it was that, I was quite shocked. I have always been fit, healthy and led an active lifestyle but I’m told it can happen to anyone. Some people do get it once and that’s it but others aren’t as lucky and get it over and over again. The granulomas [tiny lumps which develop in and on the body] are helped massively with steroids but they can also clear up on their own.”
Which is exactly what happened to Andy when he had his first – and only – attack in August 2007. “It just cleared up on its own without any medication,” he adds. “I was very fortunate, and I was told this was down to a healthy lifestyle. I just didn’t want to go down the steroid road.
“It is a recurring problem, however, and it will come back again and again. It’s just lying dormant right now in me. I’m lucky in that my health is as it is, and that my body can beat it off on its own. Others aren’t so fortunate. I’m relieved that, right now at least, I don’t have to use steroids.”
According to Dr Noemi Eiser, a spokesperson for the British Lung Foundation in Scotland, while sarcoidosis is relatively rare, it tends to affect young people between 20 and 40 years old. And their biggest problem is that experts just don’t know why some get it while others don’t.
Noemi says: “There is something in the environment which sets the body’s defences up against itself. And there probably is some genetic predisposition.
“It’s effectively the body turning on itself really, and it’s a condition where you get chronic inflammation of a particular type which produces granulomas. These granulomas are full of white blood cells and giant cells. They look like TB but it’s not caused by TB, nor is it an infection. In its most common form it affects the lung. But it can also affect other organs such as the heart, brain, liver, eyes. And it’s thought that these granulomas produce vitamin D.”
She continues: “It seems like common sense not to have additional vitamin D. Also sufferers tend to have high amounts of calcium in the urine, which can cause kidney stones. There’s no concrete evidence to prove this link but intuitively people know and realise it’s not sensible to get more.”
Which is what Andy has been consciously doing. He explains: “I’ve always been healthy but since I’ve got this, I do watch what I eat and I make choices that will help raise my white blood cells. I now eat more oily fish for my joints, spinach, and I avoid salt.
“I’ve read that diet can affect and help with this condition and there’s now specific diets that you can go on to keep sarcoidosis at bay. I’ve done my research – I’ve had to, and I cut down on things with vitamin D.”
Andy has spent months researching his condition and admits there’s a wealth of information out there, so much so he’s still learning about this relatively unknown illness.
“When I told friends and family, they were shocked,” he recalls. “And concerned. I think it’s because few have heard about it and everyone was ‘so, is that good or bad?’ when I told them. It’s much more widespread than people think and there is a lot of people out there who may well have it and not realise. But you can lead a healthy lifestyle with it – you just need to look after yourself.”
Now Andy can spend quality time with his young daughter.
“It was tough when I had that attack,” he explains. She was just learning to crawl and it was difficult for me to get down on the ground or even pick her up. I felt like an old man. Once I was diagnosed, I only needed a few days off work as my job is quite physical. And now I’m fine and can lead a normal life and spend time with my daughter.”
POINTS OF ATTACK
The lungs are usually the first area involved in sarcoidosis. In addition to the lungs and lymph nodes, the organs more likely than others to be affected are the liver, skin, heart, nervous system and kidneys, in that order or frequency.
THE SUNSHINE FACTOR
LEADING medical researcher, Dr Oliver Gillie, has called for a government campaign to persuade Scots to take a daily dose of vitamin D to reduce the rate of cancer, diabetes and heart disease, following research which revealed that Scotland receives 400 fewer hours of sunshine a year. And the Scotland versus England health records back up the findings.
“This report calls for urgent action by Scotland’s Government to take new measures that will give the country its best chance of improving health and of catching up with other European countries with more favourable climates,” said Dr Gillie.
His research involved examining vitamin D levels across Europe and mortality rates from certain diseases. A healthy range of vitamin D in the blood is between 100 and 150 nanomoles per litre. In Scotland many people have as little as 25.
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