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SarcoidosisUK @sarcoidosisuk.bsky.social · 3d

Today is World Mental Health Day and we know that having a rare disease can take a huge toll on your mental health. Remember to check in with yourself today.

If you have found yourself struggling, take a look at our 'Sarcoidosis and Mental Health' page here: www.sarcoidosisuk.org/support/sarc...

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SarcoidosisUK @sarcoidosisuk.bsky.social · 20d

We are looking for new trustees! 📣

Would you like to help set strategic direction for the charity? Could you act as a guardian of our vision and values? Do you have an interest in sarcoidosis? We would love to hear from you!

Find out more: www.sarcoidosisuk.org/join-our-boa...

SarcoidosisUK @sarcoidosisuk.bsky.social · 27d

We’re doing a major survey of patients and supporters to find out what do we do well, what could we do better and what else can we do to support our community. Have your say and help to shape our next steps.

Click here to 'Have Your Say' today: forms.gle/WPAS8kXBPY2s...

SarcoidosisUK @sarcoidosisuk.bsky.social · Sep 12

We’d like to give a huge shout out and thank you to Alex, along with his Dad Paul, for hosting their third annual fundraising event in memory of Julie Dawson.

We are so thankful for their continued support and for raising much needed awareness of sarcoidosis 💙

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SarcoidosisUK @sarcoidosisuk.bsky.social · Sep 10

Join our London Support Group on their trip to Kew Gardens this Sunday!

This in-person support group will meet at 11am, and is open to anyone affected by sarcoidosis in London and surrounding areas.

To find out more, please email [email protected].

SarcoidosisUK @sarcoidosisuk.bsky.social · Sep 3

We are looking for new trustees! 📣

If you would you like to help set strategic direction for the charity, act as a guardian of our vision and values and have an interest in sarcoidosis, we would love to hear from you!

Click here to find out more: www.sarcoidosisuk.org/join-our-boa...

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SarcoidosisUK @sarcoidosisuk.bsky.social · Aug 22

This bank holiday weekend, why not give our sarcoidosis themed wordsearch created by Jacqui Newton a go!

Download the wordsearch here: www.sarcoidosisuk.org/wp-content/u...

We also have a large text version available if needed: www.sarcoidosisuk.org/wp-content/u...

Good Luck! 🎉

SarcoidosisUK @sarcoidosisuk.bsky.social · Aug 15

Join us for the next North West Support Group meeting taking place on Monday 18th August at 6:45pm!

This is a virtual event, taking place on Zoom, and is open to anyone in the North West.

If you would like to join, please contact [email protected] for more details!

SarcoidosisUK @sarcoidosisuk.bsky.social · Jul 25

Today, our Sarcoidosis Facebook Support Group turns 10!

A special shout out to our amazing volunteer moderators who help to keep our groups free of spam, and full of support - we couldn't do it without you!

Click here to join our Facebook community: www.facebook.com/groups/sarco...

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SarcoidosisUK @sarcoidosisuk.bsky.social · Jul 15

Have you seen our Support Services Poster?

We know that sarcoidosis can be confusing and isolating, particularly for newly diagnosed patients. We hope this poster will let patients know that we're here for them.

You can order this poster here: store.sarcoidosisuk.org/product/supp...

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SarcoidosisUK @sarcoidosisuk.bsky.social · Jul 14

We've had 53 donations in the last 30 days, thanks to our supporters using #easyfundraising when they make online purchases! Thank you! It's never too late to sign up and help us if you haven't already. Plus, join today and we could win a £500 donation: join.easyfundraising.org.uk/sarcoidosisu...

You spend, brands donate to SarcoidosisUK.

Help us when you shop with 7,000+ brands. Join now.

join.easyfundraising.org.uk

SarcoidosisUK @sarcoidosisuk.bsky.social · Jul 7

Join us for the next North West Support Group meeting taking place on Monday 14th July at 6:45pm!

This is a virtual event, taking place on Zoom, and is open to anyone in the North West.

Please contact [email protected] for more details!

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SarcoidosisUK @sarcoidosisuk.bsky.social · Jul 2

We will continue to provide input into the consultation process to ensure that those most disabled by sarcoidosis are not financially disadvantaged by future changes.

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SarcoidosisUK @sarcoidosisuk.bsky.social · Jul 2

SarcoidosisUK welcomes the UK Government’s decision to remove changes to Personal Independence Payments from the recent welfare bill until after the Timms review.

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SarcoidosisUK @sarcoidosisuk.bsky.social · Jul 1

Join us for the next London Support Group meeting taking place on Monday 7th July at 7:00pm!

This is a virtual event, taking place on Zoom, and is open to anyone in London or the surrounding areas.

Please contact [email protected] for more details!

SarcoidosisUK @sarcoidosisuk.bsky.social · Jun 24

In celebration of #SmallCharityWeek, we're taking a moment to highlight how our work is made possible through incredible support!

We truly benefit from our supportive sarcoidosis community thanks to our remarkable volunteers and supporters. Thank you for everything you do!

SarcoidosisUK @sarcoidosisuk.bsky.social · Jun 20

We have created a 'Newly Diagnosed' page to help answer some of those burning questions, such as 'what is the outlook?', 'what support is available?', and 'how can I prepare for an appointment?'.

Check out our newly diagnosed page here: sarcoidosisuk.org/information-...

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SarcoidosisUK @sarcoidosisuk.bsky.social · Jun 18

It's that time of year again! ☀️

As temperatures rise, many people affected by sarcoidosis are at a higher risk of health problems. Luckily there are many ways to stay cool and lessen the impact of the heat.

Click here to find out more: www.sarcoidosisuk.org/staying-cool...

Quote from Professor Ling-Pei Ho in a cloud with a beach ball in the top right and flip flops in the bottom left. The quote reads:
"In prolonged heat waves in the summer, sarcoidosis patients have a higher tendency to have abnormally high calcium levels (hypercalcaemia). It is very important that they cover skin up, use high factor sunscreen, stay hydrated and avoid eating high calcium foods like oily fish, milk and cheese. They should go to see their GP if they experience aches and pains, vomiting, nausea and more severe than usual fatigue."

SarcoidosisUK @sarcoidosisuk.bsky.social · Jun 16

We're registered on #easyfundraising which means you can raise free donations for us when you shop online from over 8,000 retailers! Sainsbury's, Argos, Just Eat and more are ready to donate at no extra cost to you. Sign up today and we could win £500: join.easyfundraising.org.uk/sarcoidosisu...

You spend, brands donate to SarcoidosisUK.

Help us when you shop with 7,000+ brands. Join now.

join.easyfundraising.org.uk

SarcoidosisUK @sarcoidosisuk.bsky.social · Jun 13

Do you have neurosarcoidosis? 📣

Our friends in the research team at University Hospital Coventry & Warwickshire are conducting a patient survey looking at treatment related side effects in neurosarcoidosis.

Find out more: forms.office.com/e/M0P9nAKn8c

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SarcoidosisUK @sarcoidosisuk.bsky.social · Jun 10

Did you get our May Newsletter? 📨

Don't miss out - catch up on our latest news! Check your inbox now or click here: www.sarcoidosisuk.org/about/newsle...

To make sure you don't miss out on any of our future updates, sign up to our mailing list 💌

#newsletter #sarcoidosis #update

SarcoidosisUK @sarcoidosisuk.bsky.social · Jun 5

Today, we're celebrating our incredible volunteers! We're grateful for them all year round, but as it's Volunteers Week we wanted to share a little bit of extra love to the incredible people who support us 💙

Email [email protected] to learn how you can get involved ✨

SarcoidosisUK @sarcoidosisuk.bsky.social · May 30

This quote was taken from our Patient Day on the 29th April. If you want to watch Professor Anne-Marie Russell's presentation on managing your sarcoidosis symptoms, with an emphasis on fatigue, please click here: www.sarcoidosisuk.org/symptoms-202...

Blue background with a quote in a line box. The quote reads "There needs to be a strong emphasis on non-pharmacological support and symptom palliation [symptoms relief]...ultimately you have the right information at the right time and in the right place to make informed and shared decisions is really crucial to maximise your quality of life" - Professor Anne-Marie Russell

SarcoidosisUK @sarcoidosisuk.bsky.social · May 29

It can be difficult to know which consultants to ask for a referral to when seeking specialist care for sarcoidosis. Our Consultant Directory is a growing database of consultants that have been recommended to us by patients and healthcare professionals: sarcoidosisuk.org/information-...

SarcoidosisUK @sarcoidosisuk.bsky.social · May 23

In about 90% of patients, sarcoidosis affects the lungs and/or lymph glands, this is known as 'Pulmonary Sarcoidosis'

Multiple tests or scans may be needed to make a diagnosis, particularly if the symptoms aren’t obvious.

Find out more here: www.sarcoidosisuk.org/information-...

A circular graph indication 90% with a blue lung graphic in the center of it. The words underneath read 'Pulmonary sarcoidosis occurs in around 90% of sarcoidosis patients'

Techniques to understand Pulmonary Sarcoidosis:
- Lung Function Tests;
- X-Rays;
- CT Scan;
- MRI Scans;
- Bronchoscopy;
- VATS (Video-Assisted Thoracoscopic Surgery) in rare cases

Common symptoms of pulmonary sarcoidosis include:
- fatigue and feeling ‘washed out’;
- shortness of breath, especially with exercise;
- dry and persistent cough;
- chest pain.

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