Cadi's story: "PIP helps me stay in work" living with Sapho syndrome

Cadi Evans-Conlon, 35, Warwickshire, began suffering shortness of breath in early childhood but was 24 by the time she was finally diagnosed with Sapho syndrome, a condition similar to rheumatoid arthritis that primarily effects the chest. She says PIP has helped her continue to work part-time, care for her daughter and with health needs including medication and physiotherapy.

Arthritis initially diagnosed as childhood asthma

I started feeling short of breath when I was about six. Doctors diagnosed asthma and it seemed to stabilise but when I got to my teens I was constantly short of breath and in pain. I was referred to different clinics and given blood tests and x-rays but didn’t fit any diagnosis. They did suspect depression and then diagnosed chronic fatigue syndrome because nothing else seemed to fit but I knew both the exhaustion and depression were because of the pain.

I was back and forth to the doctors then, at 24, it suddenly got worse to the point I felt I was dying so I went to hospital who ruled out emergencies then referred me back to rheumatology. All tests came back normal until, eventually, they gave me an MRI with contrast and that’s when they diagnosed Sapho syndrome which my rheumatologist explained is similar to rheumatoid arthritis but, for the vast majority, the main problem is the chest and sternum which makes it difficult and painful to breathe. I’ve been on and off sulfasalazine since then and am about to be switched to methotrexate which will, hopefully, get me to where I need to be.

Sapho syndrome had a huge impact on my life

I dropped out of school in year 8 because I couldn’t manage the pain and exhaustion so I had a local authority tutor for two hours a week who supported me in getting to college which was much better for me. I’ve struggled with my mental health for many years and it’s 100% related to the conditions I live with. 

The condition made work difficult as most jobs involve talking so I went part time a few years ago. Taking Wednesday off meant I could rest between working days, it also meant I could see my rheumatology nurse on my day off instead of eating into my annual leave for appointments.

The condition has also affected my home life. My daughter is two and as she gets more physically demanding I struggle with lifting, changing, dressing and bathing her. I try to focus on things I can always do for her, for example, she still likes to be held when she naps so whenever we’re together, I’ll always do that. Housework is also really difficult because if I overexert myself I can feel the effects for days, if not weeks.

PIP helps me stay in work

I’ve been awarded PIP and that’s helped me manage going from full time to part time. It’s also meant I can pay for someone to drop and collect my toddler from nursery as I can’t manage it on my own and my partner does shift work so he can’t always do it. It’s also helped cover the upfront cost of taxis as Access to Work only part-funded this.

It’s also paid for a Tesco delivery every other week which has made a real difference because I can’t carry bulky shopping bags and walking around the shop leaves me out of breath. 

It also covers the cost of using air conditioning which has been life changing for me the last couple of years because my condition gets worse in the hot weather and I really struggle.

PIP also helps me manage my health, paying for lidocaine patches which really help with surface-level pain but which the NHS won’t always prescribe because they are quite expensive. I don’t use them daily anymore because of the cost. I was also able to see a physiotherapist every month for a year when I found six sessions on the NHS weren’t really enough to help me learn the exercises to help me.

Having a Blue Badge has been a life saver because I used to avoid going anywhere as I can’t walk far but parking nearer and having extra space to get in and out of the car which is so painful, has made a big difference.

PIP needs a kinder application process

I was awarded PIP on first application which was such a relief and I’ve just had it extended to 2032 which makes sense as my condition isn’t likely to improve. I was prepared for an assessor who didn’t know about Sapho but was not expecting to have to explain arthritis in general to a mental health specialist. I think having a rheumatology or orthopaedic specialist would have been helpful.

The application process could be kinder, it is quite daunting, just writing the form took ages as I had to do it in stages and, eventually, ask for an extension. Then I had to wait from November to Summer to find out if it would be awarded which was stressful.

I’m a social worker and always try and remember that although each family I speak to is one of 20 for me that week, what is work for me may well be the worst phone call someone has ever received. We may be one of 50 claims an assessor is processing that week but they need to remember there’s a human on the other side of it.