Sarcoidosis UK provides support to disease sufferers across the country and is aiming to celebrate its 20th anniversary by curing rare disease
Published on Wednesday, 10th January 2018
Charity aiming to celebrate its 20th anniversary by curing rare disease
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One in 10,000
If sarcoidosis is not a disease you’re too familiar with, you need hardly be surprised: specialists estimate that only one in 10,000 people in the UK are affected by it. However, for the unfortunate souls who are, it can be a tremendously draining ordeal.
Sarcoidosis is an immune system dysfunction commonly found in the lungs, but which can affect any part of the body, causing inflammation. Granulomas form within organs and systems of the body like tiny tumours, causing fibrosis which can lead to organ failure.
Unfortunately, the cause of sarcoidosis is not yet known for definite, and the only known way to diagnose sarcoidosis is to rule out a diagnosis of any other possible inflammatory illness.
By the time sarcoidosis has been correctly identified, it may well have had a devastating effect on the patient – while a significant proportion of sufferers do make a full recovery (at times without any treatment at all), many do not and symptoms range from a cough or feeling of breathlessness to swollen glands, joint pain or even death among those whose brain, lungs or heart are affected.
Jacqui Newton is 61; she was diagnosed with sarcoidosis at age 18. ‘I’ve developed from having lung, eye and skin symptoms to joint and neurological symptoms,’ she admits. ‘I’ve got neurosarcoidosis and it’s in my spinal cord – it’s been there since 1990.’
As sarcoidosis is relatively uncommon, some medical professionals are misdiagnosing the condition as any number of other ailments, causing lack of treatment and permanent damage. Tests didn't support what I was claiming so my GP suggested it could be psychological.”
'I've had immuno-suppressive treatment since 1990 and although my prognosis is not good, I do really well considering and achieve medication-induced remission for a while – medications are toxic and side effects are unbearable for some – the most debilitating symptoms are extreme fatigue and pain – but I tolerate them quite well.
'I feel lucky never to have had depression which understandably, can be caused by chronic illness.
With over 40 years of first-hand experience of the disease, there are, perhaps, few better qualified than Jacqui to run several sarcoidosis support groups, both in Scotland and in England on behalf of charity SarcoidosisUK which have been described as 'invaluable,' and 'productive,' by attendees. She also helps monitor sarcoidosis support groups on Facebook (SarcoidosisUK Scotland Support Group and SarcoidosisUK Facebook Group), for those who may not be able to access the meetings themselves.
Jacqui runs sarcoidosis support groups around the country
"A great source of support, knowledge and inspiration."
Wendy, Support Group Member
‘Usually, you’re talking to a doctor who doesn’t understand your condition,’ Jacqui explains. ‘There are so few specialists in the UK that you don’t feel that they really know how it affects you: two of the main complains are extreme fatigue and feeling desperately ill. People struggle to cope with their debilitating symptoms and lose their old selves, and this isn't appreciated by doctors or in benefit applications.’
This, Jacqui says, is where the support groups can be invaluable – allowing members to share in a more intimate setting, the way their disease has progressed and learn more relevant information to their particular situation, in an instant.
‘A lot of people lose their friends and family because they’ve never heard of the illness,’ she points out. ‘They don’t understand how it works, and the person that suffers doesn’t want to be seen to be suffering all the time.
‘That’s mostly the case with our members – they feel uplifted because they’ve been able to do this and it gives them a bit of self-awareness and courage to be able to say “this is what I’m dealing with.” It’s kind of enlightening.’
The Sarcoidosis UK support groups have been described as 'enlightening'
"The group I go to keeps me going."
Carole, Support Group Member
SarcoidosisUK, celebrated its 20th birthday last year. The organisation is funded solely by personal donations of both time and money, and works to provide accurate and detailed information to sarcoidosis sufferers, their carers and medical professionals.
Given the charity has recently reached such a significant milestone, it is perhaps fitting – and definitely exciting – that they are currently attempting to raise enough funds to invest in an extension of some very promising research into a cure for sarcoidosis at the University of Vienna.
It has been discovered that a protein called mTOR is active in cases of sarcoidosis – it causes the formation of granuloma and leads to progression of the disease. The research involves mTOR inhibitors – drugs which are already available and used in transplant medicine and cancer treatments – and testing to see whether they can be used to block the development of the disease.
‘We’re excited to explore the opportunity mTOR blockers represent,’ said Henry Shelford, Chairman and CEO of SarcoidosisUK. ‘We truly may be on the verge of a cure.’
After years of struggle, it appears that there may be light at the end of what, for some, has been a very dark tunnel.
Please help SarcoidosisUK on its journey to helping cure the disease and to continue providing vital support groups like Jacqui's by donating what you can.