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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Friday 30th August 2019

The future of systemic sclerosis classification

A recent review published in Nature Rheumatology focused on research into the classification of scleroderma, which suggests that the current classification does not capture the heterogeneity of the condition.

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Thursday 22nd August 2019

Understanding vascular involvement in systemic sclerosis

In her talk at SRUK’s regional conference in Cambridge, Dr Robyn Domsic discussed a variety of topics that are crucial to understanding vascular involvement and expert recommendations on management.

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Tuesday 20th August 2019

Oral and dental involvement in scleroderma: What happens and how can it be managed?

Recently, a poll was run online to understand what oral and dental complications of scleroderma impact those living with the condition the most. We’ve selected some questions from the poll to answer here.

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Wednesday 14th August 2019

Meet Our Fundraisers Shining A Spotlight On The Importance Of Early Detection

As a charity, our community of fundraisers are crucial to the work that we do. We are shining a spotlight on two fundraisers who are particularly passionate about the importance of early detection.

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Tuesday 6th August 2019

Recent findings from SRUK-funded study of wax-bath treatments for scleroderma published

The musculoskeletal features of systemic sclerosis (SSc) are a major cause of disability, causing limitations to movement and function. The study aim was to compare the effects of daily hand exercises with or without daily home wax bath hand treatment in patients with SSc.

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Friday 2nd August 2019

Why Early Detection of Scleroderma Matters

For patients with scleroderma, early detection is crucial. It can make a world of difference when fighting a disease as unpredictable as this one. In order to highlight the importance of early detection, we have collated anecdotes from our community members about their experiences with early detection, or lack thereof.

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