Tuesday 19th November 2019

Quality of Life: A history of funding from SRUK

Here, we highlight some examples of research projects that have been funded by SRUK in the past which focus on improving quality of life for patients.

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Tuesday 5th November 2019

Research into gut involvement in systemic sclerosis

Dr Tracey Frech, the director of the systemic sclerosis (SSc) clinic at the University of Utah, and Salt Lake Veterans Affair Medical Centre, focussed her talk at the Cambridge conference on gut involvement in systemic sclerosis and the importance of research in this subject area.

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Wednesday 30th October 2019

Latest news from clinical trials of scleroderma treatments

The theme of Dr Voon Ong’s talk at SRUK’s Cambridge Conference in July was clinical trials in the field of emerging therapies, providing an overview of the latest news from recently completed clinical studies and of ongoing studies that show significant promise.

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Friday 25th October 2019

Can lung fibrosis be stopped?

Close to 70% of people living with systemic sclerosis develop interstitial lung disease, which often takes the form of pulmonary fibrosis. Recent research into protein inhibitors may lead to new therapeutic agents to treat pulmonary fibrosis.

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Tuesday 8th October 2019

Maxine Jackson's story

Hairdresser Maxine Jackson shares in this piece how she remains motivated to focus on her passions whilst overcoming the day-to-day challenges of scleroderma and the common misconceptions.

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Friday 4th October 2019

Physiotherapy exercises for systemic sclerosis: NHS physiotherapy guide

Physiotherapy relies on a variety of techniques to help restore movement and function when someone is affected by injury, illness or disability. Physiotherapy exercises are rapidly becoming a key management approach that can be taken to limit tightening of skin, which is characteristic to all forms of scleroderma.

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Tuesday 1st October 2019

Lizzi Hooks’ story

Proud mum Lizzi Hooks, 38, has lived with Raynaud’s phenomenon for most of her life, following self-diagnosis at the age of 14. Lizzi has told us her story to share how she manages daily tasks when her fingers fail her.

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Monday 23rd September 2019

Is botox an option for Raynaud’s?

Botox surgery is emerging as a form of treatment for Raynaud’s phenomenon, but the reasoning behind why this may work remains unclear. Research evaluating the use of Botulinum toxin type A (BoNT/A), one of the the main ingredients of Botox, has been steadily building since the early 2000s.

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Friday 13th September 2019

FDA approve drug for SSc-ILD: Ofev capsules

In an exciting step for scleroderma treatment, the USA’s Food and Drug Administration (FDA) have approved the use of nintedanib in treating interstitial lung disease associated with systemic sclerosis, making this the first therapy for those living with this condition caused by lung fibrosis.

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Friday 6th September 2019

Your employment support allowance stories

Many of our community will understand the difficulties that come with trying to secure disability benefits. As scleroderma is still a little known illness, it can take some hard work to secure the benefits you are entitled to. To help you figure out how to approach the process, we’ve asked members of our community to share their experiences.

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