Written by Editorial Team, DonateToday
Published: Thursday, 5th April 2018

'It's not as though your leg's in plaster' - what it's like to live with 'invisible illness' sarcoidosis and how a cure could be on the horizon

Back in January, Jacqui Newton spoke to us about living with little-known condition sarcoidosis and how she and UK charity SarcoidosisUK are supporting other sufferers with the condition. Lesley Cochrane is one of the people that the charity supports – she told us about living with the condition for eight years; a lack of understanding from family and friends; and the work being done to fight sarcoidosis.

Progressively Worse

‘I found out that I had the condition eight years ago,’ Lesley explains. ‘It had started off as joint pain – they thought I might have arthritis and sent me to hospital. I had a chest x-ray then they sent me for biopsies.’

Lesley was eventually diagnosed with sarcoidosis – a condition which can affect many parts of the body but has also been known to go into remission within a couple of years of diagnosis.

Unfortunately, Lesley was not so lucky. ‘It’s got progressively worse over time,’ she admits. ‘I’ve got growths on my brain; I’ve got it in my lungs; my joints; my bones; my eyes; my mouth; my nose; my skin; everywhere really.’

The main symptoms Lesley suffers with are joint pain and fatigue – she describes the latter as: ‘a killer.’

‘You make appointments to see friends and family and then have to pull out at the last moment,’ she explains. ‘Because it’s an invisible illness, they see you as being OK – it’s not as though you’ve had your arm cut off or you’ve got your leg in plaster. Some people just don’t get it.’

Support

Fortunately, there are some people out there who do get it. National charity SarcoidosisUK run support meetings and social media groups for those living with the condition – a place to share stories, understanding and advice.

‘I researched sarcoidosis when I found out I had the diagnosis,’ Lesley recalls. ‘I asked to be included in the Facebook groups and that was where I met Jacqui [Newton, a fellow sufferer of sarcoidosis who runs support groups in Scotland].

‘The groups have helped me – I’ve managed to make friends with people that have the illness, that understand what I’m going through and have been able to suggest different treatments they’ve been on, and I’ve been able to help other people as well.

A recent SarcoidosisUK support group meeting in Aberdeen

‘I went through depression – I’ve had to go through all the ups and downs of being put on different drugs – and now I’m at the stage of acceptance, but I know of some people who are so depressed that they’re saying: “Is life worth living now?” 

‘I say: “Keep living, keep going because there could be a cure right around the corner – we just don’t know.”’

Life-Changing

As far as SarcoidosisUK are concerned, Lesley is absolutely right: a cure really could be ‘right around the corner.’

The charity is currently fundraising to support pioneering research. Scientists have discovered that a protein called mTOR is active in cases of sarcoidosis. It is hoped that mTOR inhibitors – drugs which are already available and used in other kinds of medicine – can be used to ‘switch off’ the active protein in sarcoidosis sufferers and prevent the progression of the illness.

To support this potentially life-changing research, the charity is organising a range of events up and down the country, and Lesley is excited to get involved. ‘The four Scottish groups have decided to pool our resources and just have one event,’ she reports.

‘We’re having it during the day: Jacqui has organised a band to play; her son’s doing magic tricks; we’ve got a raffle; guess the number of sweets in the jar; guess the weight of the cake that I’m going to bake; and I’m going to take some cupcakes along.

‘Another thing the illness has taken away from me is being able to work – I haven’t had a job in almost four years. If my illness could be ‘turned off’ by this mTOR research then I would love to get back to work; I miss being around people.’

About this charity

SarcoidosisUK

Sarcoidosis is a rare disease that suffers from poor quality information, low levels of support and almost no research into finding a cure.

Founded in 1997, Sarcoidosis UK – previously Sarcoidosis and Interstitial Lung Association – has more than 20 years of experience in helping people with sarcoidosis, and all of its board members have experience of the condition.

The charity has four goals: to provide accurate, detail information to people with sarcoidosis, their carers, and medical professionals; to provide support to people with sarcoidosis in person, via telephone, via email and via social media; to raise funds to be invested into medical research working to find a cure to sarcoidosis; and to raise awareness and understanding of the condition amongst the medical profession and general public.