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We are here if you’re living with Relapsing Polychondritis.
relapsingpolychondritis.org
#relapsingpolychondritis #rp #tbm #tracheobronchomalacia #RareDisease
English
Amanda Jones
3.7K posts
Amanda Jones
@Missysmatters
Disabled Author & crafts. Quaker. Relapsing Polychondritis Tracheobronchomalacia, Endometriosis. FB, IN, PIN, Kindle.
Okehampton, England Katılım Mayıs 2017
1.4K Takip Edilen496 Takipçiler
Home Mechanical Ventilation in Partnership@HMViPGroup
HMViP has been looking at how HMV impacts relationships. Today we share the story of Lynda & husband Ian, and why not compromising being a wife or a husband is important. Follow this link to watch their story hmvip.co.uk/patient-story-… #addinglifetoyears
QAM
It’s wonderful to see Cripping Breath appreciated here.
sheffield.ac.uk/cripping-breat…
#respiratory @crippingbreath
English
@crippingbreath A very useful talk, thank you.
Home Mechanical Ventilation in Partnership@HMViPGroup
The @asthmalunguk ventilation support group was treated to a talk from Matt Hampson, founder of @Hambofoundation last month. To see Matt's determination to #getbusyliving following his rugby accident and to help others, go to hmvip.co.uk/patient-story-… #addinglifetoyears
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Amanda Jones retweetledi
This animation from 1932 is a masterpiece. It was the first cartoon to win an Oscar.
English
My blog and video about Disability Justice has been published, sharing my story to bring awareness and help others.
transitiontogether.org.uk/disability-and…
youtu.be/_xvxaVvuLG0?si…
@crippingbreath @KirstyLiddiard1 @suzanneglover0 @jenniferkettle1 @DisRightsUK @scope #Disability #disabledwoman
YouTube
English
Ruth shares her story about postpolio hypoventilation.
sheffield.ac.uk/cripping-breat…
#polio #postpolio @crippingbreath @HMViPGroup
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Amanda Jones retweetledi
Fab write up from @PathfindersNMA about our joint event, My Life with Ventilation last month 🙌🏽
@HMViPGroup @DisMatters @Missysmatters @BTSrespiratory @KirstyLiddiard1 @suzanneglover0 @JulieCarmel1 @jenniferkettle1 @gracearjoseph @loubietheartist
pathfindersalliance.org.uk/my-life-with-v…
English
An interesting blog from @crippingbreath colleagues. As I learn to adapt to new treatments in addition to my existing ones crip time is needed to find two extra valuable hours each day.
sheffield.ac.uk/cripping-breat…
@HMViPGroup #breathing #respiratory #DisabilityAwareness
English
Cripping Breath colleagues have shared this amazing blog about being involved in the arts with exciting theatre to come soon.
sheffield.ac.uk/cripping-breat…
@crippingbreath @HMViPGroup @kingshealth #respiratory #breathing
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English
Designing for inclusion benefits everyone, RiDC’s ‘re-imagining retail’ project shows how.
ridc.org.uk/news/re-imagin…
@DisRightsUK
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My work with KHP is brilliant thanks to collaboration together.
kingshealthpartners.org/latest/patient…
#WorldLungDay #worldheartday @kingshealth
English
Take a look at true coproduction in respiratory health with @crippingbreath on this #WorldLungDay
frontiersin.org/journals/socio…
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Amanda Jones retweetledi
🎂 Geocaching is 25 years old this year! 🎂
Tag or send this to someone whose birthday is coming up. 🥳
Video by gc_el_sliepo.
#geocaching
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Amanda Jones retweetledi
Textile artist Julie Collings, hand dyed silk velvet caps and needle felted wool stems #WomensArt
English
An exciting project to gather insights into ventilation, interviews with UK patients, by patients. @LFRUPA @DisMatters @HMViPGroup @OfVentilation @LaneFoxResearch @RebDCruz @NickHartGSTT #respiratory
@CrippingBreath@crippingbreath
Do you use ventilation (bipap/trach/NIV)? Do you want to share your story? We're looking for adults in the UK to take part in two online research interviews. For more info: Everyday Stories of Breathing and Ventilation | Cripping Breath | The University of Sheffield
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Amanda Jones retweetledi
This week's IL newsletter: Martha’s Rule to be implemented across England – A vital new right for patients and families concerned about hospital care. #MarthasRule #PatientSafety #HealthcareRights #ILnews
preview.mailerlite.com/i1x2n5s9k3
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Sheffield University I work with on their Cripping Breath team have produced an accessibility guide.
equityinclusionsheffield.co.uk/wp-content/upl…
@crippingbreath @DisRightsUK #Accessibility #Inclusion #Equity #equality
English
@savebutterflies We saw many of these at a mothing last week.
English
Moth or bird dropping? 🤔
The Chinese Character combines its curious wing-pattern and resting posture to give the appearance of bird poo as an inventive way of avoiding the attention of hungry predators.
📷: Iain H Leach
#MothMonday #MothsMatter
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