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Carole Sian Profile
Carole Sian

@scrufton73

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Following
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Statuses
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@FibroFlutters #patientspeaker #ChronicIllness #ChronicPain #hEDS #MentalHealth #IBS #rare #ZebraStrutters #patientengagement MYH11 & TNFRSF13B gene mutations

North East, uk
Joined March 2014
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@scrufton73
Carole Sian
8 months
Anyone for purple fluffie hugs? For a while, these were a virtual concept, & now I can bring them to life! 😜 Fluffmeister shall rise again to give fluffie hugs to those with #chronicillness who need them (#AIcreation- #MicrosoftDesigner) #fluffiehugs #ChronicPain #Fluffmeister
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@Ataxia_and_Me
Ataxia and Me CIO 1184030
1 month
ICYMI #Ataxia_Spotlight Ataxia is rare. #Friedreich’s ataxia, which is the most common type of hereditary ataxia, affects approximately 1 in every 50,000 people. #Ataxia #patients #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025
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@Ataxia_and_Me
Ataxia and Me CIO 1184030
1 month
ICYMI, this morning #Ataxia_Spotlight Sometimes ataxia develops for no obvious reason. Patients with sporadic ataxia have no ataxia family history ...... #Ataxia #patients #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025
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@Ataxia_and_Me
Ataxia and Me CIO 1184030
1 month
Coming SOON (TOMORROW) #Ataxia_Spotlight on our #SocialMedia channels from @ 9.25 am during the month International Ataxia Awareness Day = 25th September (9th month, 25th Day) #IAAD #IAAD2025 support the #charity at https://t.co/aHibJnKGYn
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@AChVoice
A Chronic Voice
1 month
“Take a moment to sit with yourself. How are you really feeling right now, and what is the root cause?” - Get the September #mindfulness #journaling #prompts in the post! Theme for the month is “Space & #Relaxation”.: https://t.co/kNwyZurlB3 #MondayBlogs
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@PAINthejournal
PAIN Journal
1 month
Chang et al. find that insomnia may impact pain perception and inhibition in females with chronic low back pain. Integrating sleep assessments is essential for comprehensive treatment strategies. Learn more in #PAIN https://t.co/jD7lTHyaEA
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@CarersTrust
Carers Trust
1 month
The UK Government's 10 year plan for health in England has a big emphasis on "Neighbourhood Health Services". But what might this mean for unpaid carers, and where do local carer services fit in? Join Carers Trust for this post-summer webinar as we examine this important topic.
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@NHSEngland
NHS England
1 month
If you’re a registered nurse, midwife, nursing associate or student, we need your help to develop a professional strategy for nursing and midwifery in England. 💙 Complete this survey by 29 September to share your experiences, aspirations and ideas.  https://t.co/4fSp3XDQjc
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@Springer_Med
Springer Medicine
2 months
How can you best treat functional neurological disorder (FND)? Join our expert-led webinar to increase your confidence in recognizing FND, communicating the diagnosis effectively, and helping your patients manage the disorder.
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@ern_reconnet
ERN ReCONNET 🇪🇺
1 month
Register now for the 🆕@ern_reconnet #webinar “Exercise in adult idiopathic inflammatory myopathies (IIMs)” with Prof. I. Lundberg, Prof. L. Diederichsen, Prof. H. Alexanderson, moderated by Dr. O. Drápalová. 🗓️Sept 10th - 16 CEST ✍️Registration is🆓 https://t.co/H8uEmt7S7N
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@LumpyandFriends
Mr Lumpy & Friends
1 month
A busy night at the Badger Buffet by 4 of the Badgers, 4 of the Foxes, Harold the Hedgehog and Ollie the Owl 🦉 First to arrive was big boy Bramble followed by fox cub Toffee. Two more of the fox cubs Treacle and Fudge arrived to eat at the fox feeding station at the back of the
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@WeAreARMA
ARMA
1 month
Over 20 million people in the UK live with MSK conditions - many in constant pain. This #PainAwarenessMonth, we're calling for prevention, support & better care to be made a priority. Visit ARMA’s website for resources on supporting people with pain -
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@Ataxia_and_Me
Ataxia and Me CIO 1184030
1 month
Back to #School ? Checkout our #Charity #Trustee`s #Ebay page for a new #Computer #rucksack #Laptop #backpacks Last Few (Black) in Stock https://t.co/iLz9KAEb5u Be #Ataxia aware while on your adventures , while spreading awareness #Ataxia_Spotlight #FREE #Squishy #Stress #Taxi
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@Ataxia_and_Me
Ataxia and Me CIO 1184030
1 month
#Ataxia_Spotlight Ataxia is usually caused by damage to the #Cerebellum, which is the part of the brain that controls movement and coordination. #Ataxia #patients group #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025
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@AnthonyH7
Anthony Heard
1 month
Infamy infamy they’ve all got it infamy Thanks @AutoimmuneAdventures for inviting me to talk about my lived experience of ITP & Fibromyalgia ⁦@ITPSupportAssoc⁩ ⁦@Patch1Purple⁩ ⁦@UKITPR⁩ ⁦@PDSA_ITP⁩ ⁦@FibroFlutters#Global4ITP
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@NHSNW
NHS North West
1 month
Cervical screening checks for high-risk types of the HPV virus and is the best way to find out who is at higher risk of developing the cell changes that could lead to cervical cancer. Find out more 👉 https://t.co/AvxLxNchj8 #CervicalScreening
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@Ataxia_and_Me
Ataxia and Me CIO 1184030
1 month
#Ataxia_Spotlight Ataxia may be the most serious condition you’ve never heard of! #ataxia #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025
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@Ataxia_and_Me
Ataxia and Me CIO 1184030
1 month
Why 9.25 ? International Ataxia Awareness Day = 25th September #IAAD #IAAD2025 (9th month, 25th Day) Check out #Ataxia_Spotlight on our #SocialMedia channels from @ 9.25 am during the month
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@NHSNW
NHS North West
1 month
If you need urgent mental health support in the North West you can call NHS 111 and select the mental health option 2. 👉 https://t.co/O0ZTMYCNWC
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@eurordis
EURORDIS-Rare Diseases Europe
1 month
Most people living with a rare disease are living with a disability and have no dedicated therapy of any kind, thus making the integration of paramedical and social disciplines a priority, alongside the classical medical approach to disease management. 👉 https://t.co/HUUGBDZcFp
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@CR_UK
Cancer Research UK
1 month
September is Childhood Cancer Awareness Month 💛 Cancer is different in children and young people, so it needs a different and dedicated approach. We partner with other charities, funders and people affected by these cancers across the UK and around the world – learn more 👇
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