23 Photos and videos
Lisa EDS retweeted
12 Oct 2019
The debate on #HypermobilitySyndromes #EDS #HSD can be viewed 4.15 35 ->4.48.00
Parliamentlive.tv parliamentlive.tv/event/inde…
The transcript:
hansard.parliament.uk/common…
Key points from @CWhittakerMP re @hwcalderdale report:1)How pts feel 2)A pathway 3)#SocialCare 4)#Physio issues.
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Lisa EDS retweeted
27 Sep 2018
Many with #EDS have very smooth young looking facial skin lending to difficulty being recognized & diagnosed: buff.ly/2JLs8D8 #HSD #fibro #hypermobility #EhlersDanlos
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Lisa EDS retweeted
@EDSAmanda @EdsLisa tune in tonight or watch it on catch up. First Ellie Jane Taylor took to the stage, now Cherylee is putting one on tv, all goes towards raising awareness for #EhlersDanlosSyndrome Raising awareness all year around! Dazzle my fellow Zebra @cheryleehouston 🦓🤗
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Lisa EDS retweeted
15 May 2018
Nurse shortages cost #NHS up to £2.4 billion last year and this doesn’t include the costs of #clinicalnegligence claims due to reduced staffing levels telegraph.co.uk/news/2018/05… via @telegraphnews
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Lisa EDS retweeted
14 May 2018
Week 3 of our book giveaway! A lucky recipient, picked at random on Friday and notified by midnight on Saturday, will receive a copy of ‘Understanding HEDS and HSD.’ To be eligible, simply follow us and retweet this post! #EhlersDanlosAwarenessMonth
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Lisa EDS retweeted
12 May 2018
Happy Nurses Day to all those wonderful people who sacrifice precious time in their lives to make a difference to others... #IND2018
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Lisa EDS retweeted
justgiving.com/fundraising/l…
Donate on my justgiving page then let me know you have donated, I can then send you a DM for you to pay the 90p via paypal, then I can pop your #ehlersdanlossyndromeawarenessribbon to you in the post. All your donation goes to @ehlersdanlosuk
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Lisa EDS retweeted
26 Apr 2018
#patients #EDS patients #surgery patients. Please can you complete survey? @EdsLisa @bettyflorence23 @ACZglinska @AbiSale1 @DrEReinhold @GemmaSPearce @jvsimmonds01 @LoveInYourTummy @ehlersdanlosuk @limblessassoc Can you help circulate this survey please? x.com/patientsafe3/status/98…
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Lisa EDS retweeted
15 Apr 2018
@Asda @sainsburys @tu_clothing @DunelmUK @TheRangeUK @johnlewisretail @Hobbycraft May is #EDS #Awarenessmonth. 25th May is #StandupforEDS day. As you all sell #Zebra items or have done. Could you get involved & fundraise for @ehlersdanlosuk? Zebra #cake sale? @wlv_uni @wlv_health
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Me as a lego creation 😂 @EDSAmanda @ACZglinska @bettyflorence23 @DrEReinhold @AbiSale1 @JBOccyTherapy
Bringing my passion for lego to life
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We have patients dying on an acute surgical ward because there are no empty beds in hospice to discharge them to, families can't take them home. We can't give them the time they need if we are dealing with admissions, discharges, post-op patients, leg ulcer dressing changes. 😢 x.com/whpca/status/982694618…
Only 14% of the need for palliative care is being met at the end of life, less than 10% overall. #PalliativeCare must be available to all who need it if #UHC is to be achieved.@WHO #UHC2030 #HealthforAll #WorldHealthDay
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Lisa EDS retweeted
6 Apr 2018
Happy #FreebieFriday! For the chance to WIN a box of Lyons coffee bags, just FOLLOW & RT ☕️ #Competition #Prize #Giveaway #Freebie
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Lisa EDS retweeted
7 Apr 2018
#COMPETITION TIME!! CHANCE TO WIN A FAMILY PASS TO OUR BRAND NEW CADBURY CHARACTER BREAKFASTS! Enjoy a delicious breakfast with Freddo and friends. Be sure to bring your camera! 📷 Please RT to enter before Friday April 13th 2018. T&Cs can be found on our website.
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Lisa EDS retweeted
6 Apr 2018
Dr Anne Maitland talking about Mast Cells and EDS #edseurope18 #mastcell
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Full body flare. Everywhere hurts jaw, neck, shoulders, elbows, wrists, thumbs, fingers, back, hips, knees ankles, sore throat, mouth ulcers, widespread rash. Feeling so fatigued so for my birthday today I asked Gp for blood tests to make sure EDS/fibro not masking something else
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Saw my GP yesterday who phoned a rheumatologist in my presence they think my symptoms are pointing to lupus or possibly another auto immune disease on top of eds and fibro. Lots of blood tests taken. @EDSAmanda @ACZglinska @bettyflorence23 @DrEReinhold @EdsForum
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@EDSAmanda @ACZglinska @bettyflorence23 @DrEReinhold @otinfo @HMSawareness @edsuk_ @JBOccyTherapy DIP joints on every finger hyperextending, OT today said she doesn't like oval 8s for hypermobility so I've got to adapt tasks which I've been doing for 3 years and live with pain 😭
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Gp and physio think I need splints/oval 8s. Got my hopes up that I was going to get help today. Cried in front of OT, she asked why I was crying I said I'm tired, I'm fed up of being in pain and activities being restricted because of pain. I'm frustrated that I can't get help.
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@EdsLisa @bettyflorence23 @DrEReinhold @EDSAmanda this is a subject close to my heart. It would mean a lot if you could sign and share! 🦓😘 x.com/abisale1/status/975858…
UK Parliament: Investigate the relationship between Ehlers-Danlos Syndrome in infancy! - Sign the Petition! chn.ge/2G3R3mm via @UKChange
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@EDSAmanda @ehlersdanlosuk @JBOccyTherapy @DrEReinhold @DRADFARMER1 @patientsafe3 Amanda and I have set up our first EDS UK stand at #SUCCESSforum @wlv_uni
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@RCHPublications can you spot your book on the table 😉 very good to back up our discussions with student nurses of @wlv_uni