Sharon Widdowson was healthy, living a normal life working in a bank, enjoying life with her husband Paul and children Aimmee and Daniel.
Then two-and-a-half years ago, she was diagnosed with Clinically Amyopathic Dermatomyositis (CADM) – an extremely rare disease in which the immune system attacks body tissues.
Sharon, 46, of Patricia drive, Arnold, is believed to be the only person in the UK with the condition. She’s been speaking exclusively to Notts TV about her illness.
“I didn’t realise I’d even got the disease. It started off with, what I was told, foot-and-mouth disease. I was told to wear gloves and stay away from people for two weeks and then all my joints started swelling and aching.
“I thought I was going mad; I couldn’t understand why I was feeling so poorly. I couldn’t do anything.
“Doctors did a blood test and they said it was Rheumatoid Arthritis and got me to see a Rheumatologist who did loads of X-rays and scans and said, yes, it was Rheumatoid Arthritis.
“Then my chest became bad and they said I had a chest infection. I was put on steroids and a different medication, because the steroids caused problems.
“Then, in December 2015, I was rushed to Nottingham City Hospital because my breathing got so bad and I was in there for five-and-a-half weeks.
“They were unsure what was wrong. It initially started off with pneumonia; the doctors couldn’t understand why my lungs deteriorated so badly.
“I only had 50 per cent capacity in my lungs. They ran the blood tests and it came back that I had CADM with rapidly progressing interstitial lung disease, a complication of CADM.
“I was told I would need a lung transplant eventually.
“If I have a lung transplant, there’s a two-in-ten chance that I won’t survive the first year. If I do survive the first year, the average life expectancy is between seven and ten years.
“There’s nothing on the NHS websites because it is so rare. If you put Clinically Amyopathic Dermatomyositis into a computer, it just comes back with doctors’ papers that have been written.
“There’s not much up-to-date information out there. As far as I’m aware, there are only 85 cases in the world.
“It’s not very common in the UK which can make it quite difficult because, with other diseases, there are support networks; there are people you can talk to about it, share symptoms and talk things over.
“In my situation, there is nobody – so if I can get this out there and make people aware of it, there might just be one other person that is going through what I’m going through.
“Or if they’ve just started going through what I’m going through, I might be able to help them deal with it.
“It’s very hard; going from working two-and-a-half years ago, working full-time, running the family home and doing absolutely everything for everybody, to now being dependent on everybody is really hard to get you head around at first.
“The emotional side is harder, knowing as much as they don’t want me to say it, I am a burden to the family.
“I’m not allowed to cook because of the risk of fire with oxygen – I might blow up.
“Every day tasks, things like that, are a military operation, I have to take the oxygen and wheelchair everywhere because I can’t walk far without getting out of breath.
“We’ve had to have a downstairs wet room developed because I’m not safe to go up and downstairs when there’s nobody about.
“I can prepare vegetables occasionally if my hands will let me because my joints swell. Preparing broccoli or cauliflowers is exhausting – it’s like running a marathon. My family have to more or less do everything for me which is why I’m so grateful.
“I could sit here crying, I could sit here fed up with life – but that’s not going to make anyone around me any happier.
“We’ve got to make do with what we’ve got. We can’t change what’s happened. Nobody could wish this to happen, but it has.
“You get on with it. My children are 19 and 23 – they still need their mum and I’ll fight and I’ll be here as long as I can be, I don’t know how long that’s going to be.
“If I eventually manage to get a lung transplant, which hopefully I will, the next problem is losing four stone to get in the window to be able to have it and be able to be infection-free.
“As soon as you get an infection, they take you off the transplant list. At the moment, I don’t go four weeks without developing some sort of infection.
“My aim is, once I’ve had a transplant, that I will be able to get about better and be able to breathe better.
“I’ll still have the disease, the low immune system and the swollen joints from the Rheumatoid Arthritis, and it could affect my muscles – to what degree, I don’t know.
“The biggest part is to get my lungs right first and we’ll look at the outcome after that.
“Last year, one of the items on my bucket list was to go on a cruise, which we thought was impossible because of the oxygen. But we found a cruise company that would take the oxygen supply on-board, provided we went from the UK and come back to the UK and didn’t fly.
“We went to Norway because it’s not too hot and not too sunny, so I could keep out of the sun. We had a brilliant cruise.
“Most of the things I now want to do are with family.
“I did want to go to the zoo to have a VIP day feeding the penguins.
“But we’ve found that’s not an option. With the lung transplant it would be, but with my immune system, I’m at risk from the penguins and they’re at risk from me.”
- If Sharon finds a match, she will have a lung transplant at the Freeman Hospital, in Newcastle. A charity fashion show will take place at the Polish Club, Sherwood Rise, on March 8. Tickets are £5 and the money raised will go towards funding Sharon’s prospective transplant and to the Freeman Heart and Lung Transplant Association.