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A silent but deadly disease

SECRET SYMPTOMS: Sufferers of sarcoidosis often look well but experience fatigue

BEFORE MY beloved auntie was diagnosed with the little-known disease sarcoidosis, our own family had no idea what it was.

It seems we were not alone, as since then I have come to realise that most people have never heard of the word let alone have a basic understanding of it. After 23 long years of suffering, my aunt lost her battle with the disease. The time now feels right to raise more awareness about the condition.

Sarcoidosis (pronounced sar-coy-doe-sis) is a rare autoimmune inflammatory disease caused by problems with the immune system, the body’s natural defence against illness and infection. According to the National Heart, Lung and Blood Institute, the cause is unknown. It is thought that the inflammation is caused by a person’s immune system overreacting to an infection or imaginary infection. This causes damage to internal body tissue and organs.

It is a complex and poorly understood condition that affects many parts of the body, particularly the lungs, lymph nodes (glands), skin and eyes. Symptoms range from mild to life-threatening.

Research on sarcoidosis is scarce, but the NHS estimates that it affects approximately 19 in every 100,000 people in the UK, with The British Medical Journal noting around 3,000 people are diagnosed every year.

Sarcoidosis can affect anyone at any age, but is most common in people aged between 20 to 40 years old. Sloan Epidemiology and the Pulmonary Centers of Boston University in America found that the disease is highly prevalent in black women compared with the general population. They are also twice more likely to be diagnosed than black men.

There is currently no cure for sarcoidosis as for most people the disease spontaneously disappears without treatment after a few years, for others this may not be the case.

Comedian Bernie Mac's death in 2008 shed some light on sarcoidosis. Mac suffered from a compromised immune system as a result of his battle with the disease, though at the time of his death he was in remission.

Symptoms vary between sufferers depending on which organs are affected. Some patients show no symptoms at all. General symptoms include fever, tiredness, shortness of breath and an overall feeling of ill health as if to have flu-like symptoms 24 hours a day.

Sarcoidosis sufferer Kelly James* was first diagnosed in 1993 after experiencing discomfort in her eyes. Since then, it has gone on to affect her skin and lymph nodes (glands). Like many she had never heard of sarcoidosis.

James now becomes easily exhausted by any task that requires the use of physical energy. This is due to one of her lungs becoming weak as a result of the disease.

She said she would like to see more research and awareness carried out. “There definitely needs to be more awareness as it can mimic other conditions which could mean it is misdiagnosed. Health professionals need to know what to look out for,” James said.

Keith Prowse, a lung physician and medical advisor at the British Lung foundation, said the symptoms of pulmonary sarcoidosis, which affects the lungs, are similar to tuberculosis (TB). He believes it is fairly easy to diagnose from taking a biopsy and the pattern of symptoms. However, he does note that understanding the disease as a whole is difficult as research is still underway.

He said: “There is no simple explanation about sarcoidosis as you don’t know what exactly to look for as it can affect different parts of the body.”


PROFILE: Comedian Bernie Mac died from complications linked to sarcoidosis

This is why he thinks there is a lack of knowledge and public awareness about the disease. Even to some doctors and health professionals the complexities of the disease are mind-boggling.

Prowse notes that there tends to be a difference between patients of different ethnicities: “It tends to be found in black women more than in men, and another area [where it is most likely to affect ethnic minorities] is the brain.”

He added: “If someone was to ring up and described symptoms where the patient’s brain was involved I would immediately question whether they are from an ethnic minority background.”

Founder and chairman of the Sarcoidosis Association Martine Caitlin, who was originally misdiagnosed, set up the voluntary organisation that she funds herself to provide other sufferers with information, support and medical awareness.

Like many people, Caitlin had never heard of the disease prior to her diagnosis and searched the Internet for information.

“I thought it was ridiculous that people would have to go all over to find out about a condition that affects them.
“I decided to set up a one stop shop for sufferers to give them support so they do not need to hunt around for information.”

Through her organisation she aims to eliminate information that has proven to be out of date, misinterpreted or ill-conceived.

“The idea that sarcoidosis affects black people more is from research that is old with some dating back to hundreds of years ago. Many people didn’t know about it and still don’t so are likely to use old studies.” Through her work she has come into contact with more white sufferers as opposed to their ethnic minority counterparts.

Fifty two-year-old Pat, who is from an African Caribbean background, was diagnosed with the disease 25 years ago. Doctors originally thought it was pneumonia but after a lung biopsy, it was confirmed to be sarcoidosis. Pat says her condition forces her to plan everything she does.

“I can hardly walk or breathe and have cavities on my lungs which have led to another condition called aspergillomas where fungus grows in a lung cavity,” she explains.

She notes that the Sarcoidosis Association has been great at providing sufferers with information they need. She wants there to be more awareness about the condition as it is very serious.

“It is so annoying when people who don’t know me assume I’m not ill. Physically I look fine but my lungs are not fine.”  

Whether there will be more information and public awareness about sarcoidosis is an open question as research into the disease is ongoing. Hopefully, one day there will be an answer.

*Not her real name

If you would like to know more about the work of the Sarcoidosis Association, please visit www.sa-uk.org

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Five health conditions that disproportionately affect patients of African or Caribbean heritage

Fibroids - Non-cancerous tumours that grow in the womb affect 55 per cent of black women.

Lupus – Like sarcoidosis, lupus attacks the immune system causing a range of symtoms. Black women are three times more likely to be diagnosed.

Diabetes – a condition that causes a person’s blood sugar level to become too high. Diabetes UK says people from African Caribbean communities in the UK are five times more at risk.

Prostate cancer – The prostate gland, found only in men, is located below the bladder. The NHS claims African Caribbean men are three times more likely to develop prostate cancer than white men of the same age.

Stroke - According to the Stroke Association, African Caribbean people are twice as likely to have a stroke, because of a propensity to develop diabetes and heart disease.

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