Eva Grealish's Story

Eva, 42, was diagnosed with scleroderma in 2014 and has had Raynaud's for around 20 years. She was also diagnosed with Sjogren's in 2015.

For Eva her scleroderma diagnosis has meant having to make adjustments to her life at home and work and giving up things that she enjoys. Eva is a children's mental health nurse, she had to reduce her hours to part-time and had to adapt her lifestyle including exercise as aches, pains and injuries flare up after exercise. Eva also had to give up her amateur dramatics due to the fatigue from evening practices and rehearsals particularly coming up to a show. She even had to stop some everyday tasks like carry shopping bags or filling the car using a petrol pump.

The Coronavirus pandemic has meant even more adjustments.

“Hand washing and santiser has wrecked my hands completely. I really struggle at this time of year – my regular infusion has been postponed and that's had a big impact. My hands were blue yesterday in spite of it being the hottest day of the year. And it's been hard to get hold of my hydroxychloroquine so I've had to reduce my dosage so I don't run out."

Eva takes hydroxychloroquine regularly but has had to reduce her dosage as it's been hard to get hold of and she doesn't want to risk going 'cold turkey' if there are long-term shortages. This has been stressful for her and has had a physical impact.

Eva isn't shielding but is being very careful and avoiding going out as much as possible. Her daughter has type 1 diabetes so her and her husband are being extra careful and isolating as much as possible.

However, working from home has been challenging for Eva due to the constant workload which is increasing as cases become more urgent and her patients' mental health deteriorates without the face to face clinics that they rely on. As Eva is working from home, she has carried out FaceTime consultations which are really tiring and stressful. Despite not having her usual 1-2-hour commute, Eva has found home based working has been more stressful and this has triggered her scleroderma and Raynaud's symptoms

Unfortunately, she has also had her Iloprost Infusion cancelled which usually helps reduce fatigue and control her symptoms. Not having the treatment has meant she has struggled with blue hands even on the hottest day of the year as well as coping with the extra hand washing and sanitizer that is wrecking her hands.