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Cara Hockley's Story

Cara is 17, she is a student from Dundee and has Systemic Sclerosis and Raynaud's.

Cara was diagnosed with Raynaud's and her mum, Karen, came across the SRUK website after searching for gloves for Cara. Whilst reading info on our site Karen realised that Cara could have a more complex condition and consulted their GP, after blood tests and referral to a consultant, Cara's scleroderma diagnosis was confirmed.

Since then she has had many treatments to help increase blood flow to her hands and help with digital ulcers. Cara has had many treatments over the last 2 years and has seen the impact on these due to the Coronavirus pandemic, here is her story:

“ My condition affects my lungs, heart and digestive system so they are frequently monitored. As lockdown started, I was waiting any day for an appointment to be assessed for eligibility for a Stem Cell Transplant in Sheffield. It's sad that this is on hold but I understand why. My team are brilliant, I have a Consultant, a specialist Rheumatology nurse, OT, Physio and Psychologist in my local hospital in Dundee, as well as a Consultant Rheumatology specialist in Glasgow and have seen a scleroderma specialist in Salford a couple of times too.

Skin tightness restricts my hand movements so I use adaptations in the kitchen and also when learning to drive. Raynaud's means I always wear gloves year-round and I make sure my skin is always covered. I have found that the extra hand washing and hand sanitisers affect my skin so I need to do daily wax bath treatments and moisturisation. My lack of energy affects everything and I often take a nap. Being unable to attend school leaves me socially isolated and distance learning is tough. My condition has progressed quite fast so it's been a tough road. I am shielding now due to being on several medications which suppress my immune system.

My whole family are shielding with me. Many tests are currently on hold, consultations have been by phone/ video or email contact. The specialist nurse has come to the house for infusions, injections and bloods and has been the only person in our house for over 3 months. It affects my whole family, for example my younger brother loves golf and he can't go out on the golf course at present, it would be good to get more information of what happens next for those who are shielding.

I am anxious attending the hospital but I did feel protected when I was there, the team were fantastic and did everything to reduce the risks. Video conference calls are okay but don't make up for face to face contact. I have a few tests on hold at the moment.

Obviously the Stem Cell Transplant is a big thing and if I am eligible and it works for me could be amazing so it's disappointing that it's on hold when I was so close to starting that journey. I had hoped to be isolating after a Stem Cell Transplant this year but at least we will be good at isolating if we get the go ahead for the treatment!"