Scleroderma & Raynaud's UK

Some members of the Wales Support Group are meeting up informally next Saturday, 2nd November at the Hope Street Church café in Wrexham at 11 AM for a couple of hours. It's open to everyone, especially those of you in North Wales and the borders. Be great to see you there! For more information, email: ryan.hadlow@sruk.co.uk

Gill Taylor is 63 years old, lives in Reading, Berkshire and has limited Scleroderma and Raynaud’s syndrome. When we spoke to Gill, she said: ''I was finally diagnosed in 2017, but I had been suffering with the symptoms for quite a few years previously. As it is a complicated disease with many body parts affected, it took a long time for all the symptoms to be linked together. When it comes to managing your condition, think of different ways of doing activities, e.g, I have difficulty in cutting some foods, so I found a gadget which helps me chop vegetables by pulling a handle, which is much easier for me. If my hands do get cold when I’m out I struggle with toilet locks, unzipping trousers because I haven’t any grip so I always carry a small latex disc which helps me grip locks, zips and even my debit card when getting money out of an ATM. I don’t know what needs to be improved with treatments for Scleroderma, but I do think the general public needs more information on the condition as no one has ever heard of it. I support SRUK and use their resources frequently.'' If you have been affected by scleroderma and/or Raynaud's and want some confidential support you can call our helpline: 0800 311 2756 or send an email to info@sruk.co.uk

Brighton Marathon is back! This scenic marathon will see over 10,000 participants filling the streets of Brighton on the 6 April 2025. Participants will explore the vibrant city of Brighton and Hove, passing iconic landmarks and the stunning coastline. Following the race, participants and supporters will be able to gather for a celebration at the beach-side finishers village. By supporting SRUK, you’ll be part of our mission to improve awareness and understanding of Scleroderma and Raynaud’s, enabling us to continue supporting those affected, and ultimately help us find a cure. Registration is just £30 for the Brighton Marathon, with a minimum fundraising ask of £500. Sign up today to secure your place! https://bit.ly/3Tw4Zdo

We'd like to thank everyone who attended our webinar on Monday with Dr John Pauling who spoke about the complexity of Raynaud's Phenomenon. But if you missed it, the full webinar is now live on our YouTube Channel. Watch it now: https://bit.ly/48nkAlW

❓Did you know that the exact cause of #scleroderma is still unknown? 🚩 Scleroderma affects around 2.5 million people worldwide, but the causes behind it are still unclear. 👋Symptoms range from skin thickening to joint pain and difficulty in breathing, affecting every patient in a unique way. 🙋♀️Let’s raise awareness for people living with scleroderma! #SclerodermaAwareness #ChronicDisease #MedicalResearch

Taking place on Sunday 6 April, the London Landmarks is not your average half marathon! Sign up today and take part in London’s quirkiest Half. From cultural landmarks and heritage to the city's quirky and hidden secrets, you'll get to explore the capital on a route like no other! By supporting SRUK, you’ll be part of our mission to improve awareness and understanding of Scleroderma and Raynaud’s, enabling us to continue supporting those affected, and ultimately help us find a cure. Registration is just £20 for the London Landmarks, with a minimum fundraising ask of £400. Sign up today to secure your place! https://bit.ly/2Wr35L1

Jenny is in her mid-thirties and lives in Berkshire. In April 2022, Jenny visited her rheumatologist, and in November 2023 she was diagnosed with systemic sclerosis. When we asked her about the impact her condition has had on her, she said: ''Only in recent years has the condition developed further. My feet can feel like I'm walking on ice blocks, even if I am wearing several layers of socks. During an attack, my fingers and toes will become stiff and painful, preventing me from carrying out or completing tasks until they get back to a normal temperature. It knocks my confidence, as having white or blue hands and toes isn't the most aesthetically pleasing for others to see, so I try to keep them hidden! I have also started to suffer from acid reflux, which I understand is another symptom associated with systemic sclerosis (it doesn't reduce my eating, though, as I love food too much!).'' If you have been affected by scleroderma and/or Raynaud's and want some confidential support you can call our helpline: 0800 311 2756 or send an email to info@sruk.co.uk

"Scleroderma marked my life in many of the choices I made." - Catarina, #SclerodermaPatient 🚶➡️Living with #Scleroderma affects everything from daily habits to long-term decisions. 💪 Supporting patients make decisions about living with scleroderma can help them avoid letting the condition define their entire identity. 👁️ Discover Catarina’s inspiring story and other uplifting testimonials here: https://bit.ly/3ziyloN #SclerodermaAwareness #RareDisease #ChronicDisease

Set your calendar for October 21, 2024 at 11:00 AM, because we have a new webinar! Next week we will be joined by Dr John Pauling, a Consultant Rheumatologist at North Bristol NHS Trust who will lead a webinar about 'Exploring Raynaud's Phenomenon.' We recently spoke to Dr John Pauling who gave us a taster of what you can expect from the webinar. Find out below what he had to say: ''In the webinar, I will discuss the different forms of Raynaud’s phenomenon, highlighting some of the complexity of what we currently term primary Raynaud’s phenomenon. I will discuss the various methods we use to differentiate between primary RP and RP secondary to autoimmune disease such as SSc. I will also discuss how the term Raynaud’s phenomenon may be contributing to diagnostic delay in systemic sclerosis.'' Register now: https://bit.ly/4dJeQ6S

🍂 Living with #Scleroderma can be challenging, especially when the weather changes. Here are 3️⃣ ideas for activities to make fall a joyful time: 🔹Enjoy the crisp fall air with short, easy walks to stay active. 🔹Cozy up indoors with knitting, coloring or puzzles to keep you entertained. 🔹Make relaxing fall crafts like leaf collages or pumpkin decorations. ✨ Enjoy pre-winter times with friendly activities! #SclerodermaCare #SlcerodermaAwareness #ChronicDisease