Ann Williams could barely get out of bed as she was in so much pain with dermatomyositis.
The 76-year-old from Leyland thought she has rheumatoid arthritis as she developed a rash on her hands and chest. But after months of tests, she was finally diagnosed with a rare inflammatory disease known as dermatomyositis.
The condition is an autoimmune disease which attacks the body, causing skin rash, muscle weakness, and inflammatory myopathy, or inflamed muscles.
Ann says: “About three years ago, I noticed my cuticles were bleeding after I had my nails done at a salon. I just thought the girl had been rough but then I started with a rash on my hands and chest. It got to the stage where I could not lift my arms up and comb my hair.
“I ended up going to the doctors every week for blood tests but nothing came back.
“The doctor said he thought it was rheumatoid arthritis and I went to see a rheumatologist. But there was a long waiting time and this was getting worse. It had got to the point where I could not get out of bed or even turn in bed.
“So I went privately to see a rheumatologist and he said he thought it was actually dermatomyositis. I was put on 80mg of steroids a day and I put on two stone.
“My doctor advised me to see a neurologist and again as the waiting list was so long, I went privately to Fulwood Hall Hospital. The doctor there told me I was a very sick lady and I was admitted to Royal Preston Hospital.
“I was put on azathioprine and my hair started coming out and I had bald patches. As I had blown up by two stone, no-one seemed to recognise me.
“I was so ill in hospital and spent 11 days there. I was so bad, someone had to pull me up from my bed and if I wanted to go to the toilet I had to walk with a zimmer frame.
“I had to have all these tests to make sure there was no cancer in my body before he could give me any drugs.
“I had all sorts of tests and scans and everything came out okay.
“I had to go to theatre for a biopsy. The surgeons had to cut the top of my arm and go down near to the bone and take a sample of flesh. They then had to do the same with the top of my leg. But I was not allowed any anaesthetic because it would spoil the biopsy, so it was excruciating.
“I got through it and surgeons stitched me up. I could not bend down because of the stitches. I had to be pushed back to my bed in a wheelchair. It was just horrendous.”
The grandmother-of four was released from hospital after a short period of recovery.
But her hair was still falling out, so she changed medication.
She recalls: “I had to wear a wig because I had no hair. Every day I would see lots of hair coming out onto my pillow.
“In the end my medication was changed to mycophenolate and that was much better.
“I had to have blood tests every week for my liver and kidney function.
“But I was still bad some weeks. I could not even sit up and someone had to help me up off the chair.
“If I had known what I was going through, I would not have gone through it.
“It was so hard, especially with all the tablets, as I felt so ill all the time. But I have made it.
“I have to go for check ups at Royal Preston Hospital every six months. My last one was December. I am doing okay now and I can get off my chair more easily.
“I am now able to go out for walks with my dog and I have lost two stone, so I am back where I started.
“I have to stay on my tablets now. If I come off them, the symptoms will all come back. I will never get rid of it but at least now I can do things that I could not do when it was really bad.
“There is a rainbow at the end, but at the time, I could not think about it.
“There are so many auto immune diseases out there, but I had never heard if this one. I would say it is very similar to lupus.”
Dermatomyositis is a rare inflammatory disease, that affects the muscles.
Before the muscle symptoms occur, a red or purple-coloured rash often appears on the face (eyelids, nose and cheeks), back, upper chest, elbows, knees and knuckles.
The rash can be itchy or painful with hard lumps of tissue under the skin called calcinosis.
Dermatomyositis can affect both adults and children.
There’s no cure for this condition, but symptoms can be managed.
Dermatomyositis has many similarities to an autoimmune disease, which occurs when the body’s disease-fighting cells, called antibodies, attack healthy cells.
Having a compromised immune system may also contribute to getting the disease. For example, having a viral infection or cancer may compromise the immune system and lead to the development of dermatomyositis.