Family keep Lauren’s positivity alive after incorrect fibromyalgia diagnosis

Date: Thu 6th September 2018

Initially diagnosed with fibromyalgia, Lauren had actually developed a very aggressive form of scleroderma. Her condition worsened and after a harrowing 3 weeks in intensive care, she died of acute renal crisis and accelerated hypertension. Her father Philip tells her story.

Just after Christmas, our daughter Lauren complained about aching limbs and feeling unwell. She visited the GP who diagnosed her with fibromyalgia and gave her some tablets for it. There didn't seem to be any change to her pain with the medication and after a second visit to the GP, they changed the tablets and suggested she give them a go.

Lauren's pain steadily worsened to the point that she handed in her notice at work. She was working as an events coordinator at a venue in the area organising different things from conferences to parties. The job meant travelling 3 flights of stairs regularly every day and she told me her joint pain was just too much to bear. She was going to give up work, rent her house and move back in with Mum for a while until things settled down.

After visiting the GP again to advise them the medication still wasn't working, the GP arranged for a referral with a Rheumatologist, which would have been the week after Easter. That weekend Lauren became unwell. On the Saturday evening she was physically sick and she went to the out of hours GP on the Bank Holiday Monday, which was situated at the hospital. The GP sent her to A&E, and A&E took her straight to admissions.

She was seen quickly by several specialists and the Consultant Rheumatologist. Lauren's symptoms at this point were extreme joint pain, swelling, feeling fatigued, headaches, yellow eyes, sensitivity to light and feeling generally unwell. The consultants initially thought she had Lupus but after over 40 blood tests they confirmed she had scleroderma, diffuse systemic scleroderma and this was attacking her internal organs.

The team was in touch with specialists at The Royal Free Hospital in London. They had hoped to move her there but as she wasn't stable, this wasn't an option. The very next day she couldn't talk and was struggling to breathe. Lauren was moved to the Intensive Care Unit with an enlarged heart which had fluid on it, problems with her lungs and failing kidneys. Her internal organs were severely under attack.

Within 3 weeks she had suffered acute renal crisis which gave her accelerated blood pressure, she died on 26th April 2018. She was 28.

Although the pain of her passing is felt deeply, it is lessened by the knowledge that the last few weeks of her life were made more comfortable by the wonderful team on the ICU at the James Paget Hospital.

Lauren was an innately kind and generous person whose impact on our lives was entirely positive. Lauren loved socialising with her friends and family, she didn't crave a lavish life and would do anything to help her friends and family to her own detriment on occasions. The world has lost a beautiful and fantastic girl who we all miss greatly.

At 28, she still had a lot of good left to contribute - a piece of me left this earth when she left us. Whilst we can't save Lauren, we want to work with SRUK to raise awareness of scleroderma it's signs and symptoms, to stop this from happening to anyone else. We would like to see her positive impact continue by raising funds towards medical research, as this disease is still very little understood.

Philip has organised three fundraisers in memory of Lauren which will be raising funds for SRUK. You can find out more about his events by liking his Facebook page.

Donations are what keeps our charity going; allowing us to keep helping people and raising awareness for stories like Philip's. If you are in the position to donate then please follow this link to our donations page. We hope that one day, with the help of donations, we will be able to find more effective treatments for Scleroderma and Raynaud's and eventually find a cure.