Corrinne
@corrinneh87
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Living with Addisons Disease 🦋 ScrumMaster, Digital Services @nhsbsa 💻 *views are my own*
North East, England
Joined September 2010
Out with the old, in with the new twitter 🐦 Follow me here @corrinnelysette
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Out with the old, in with the new twitter 🐦 Follow me here @corrinnelysette
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Happy Birthday Mr President! Born #OnThisDay in history in 1917, President John F. Kennedy. JFK was diagnosed with Addison's disease at 30yrs old. His birthday is a fitting date for us to raise awareness of #AddisonsDisease and #AdrenalInsufficiency. #AddisonsDiseaseDay (2/8)
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🎉It’s #AddisonsDiseaseDay - a day for everyone around the world who is affected by Addison’s disease and adrenal insufficiency to join together to raise awareness and celebrate this incredible community. Here's some of the ways you can get involved ⬇️ (1/8)
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Save the date🎉 🗓️Saturday 29 May 2021: #AddisonsDiseaseDay Share our awareness materials, start a challenge, add our Twibbon to your profile pic - together we will improve the lives of those with Addison's & adrenal insufficiency. Find out more⤵️ https://t.co/LlU5n22bc1
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Did you know we run online CPD sessions for paramedics? 🗓️New dates now added for April 2021! So if you would like to learn more about adrenal crisis & emergency management of Addison’s, please get in touch. 🚑Find out more➡️ https://t.co/nfhSHGrACA
#ParaCPD @ParamedicsUK
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I have had to become an #expertpatient. I always prepare a clear understanding of what I think I need in advance, bring any literature to back it up, stickers to attach to my body in case I can't speak, and a readiness to argue for my treatment if necessary.
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#AddisonsDisease is really rare w/less than 10,000 cases in UK. Most medical professionals, inc. GPs, paramedics, nurses and even consultants, don't fully understand what it is or what's required. This can lead to wrong treatment in an emergency and/or medical situations.
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Meet the Researcher🔎 💉We're delighted to help fund @SOLUtionMedLLC's research to develop a simple device to administer the emergency hydrocortisone injection, for an EpiPen like experience. Read our interview with Julia for more info👇 https://t.co/LeWcBrMuVT
#AdrenalCrisis
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Thank you to @LizTwistMP for securing today's debate on the implementation of @DHSCgovuk new UK Rare Diseases Framework, calling for an action plan. 🗞️Catch up on our News item about the new Framework on our website 👉 https://t.co/bKKG6mdo8I
#RareDebate #UKRareDiseasesFramework
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I have to wear a #medicalert bracelet and carry an #emergencyinjectionkit when I leave the house. Because there is no 'epi-pen' equivilant for #adrenalinsufficiency we have to use intra-muscular needles and syringes to medicate in an #adrenalcrisis.
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Adrenal patients are constantly at risk of developing life threatening crisis symptoms, we need an Epi pen style injection. Please sign!
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Adrenal patients are constantly at risk of developing life threatening crisis symptoms, we need an Epi pen style injection. Please sign!
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Adrenal patients are constantly at risk of developing life threatening crisis symptoms, we need an Epi pen style injection. Please sign!
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Sadly she's right... i was a known patient w Addisons. Still had to fight for my IVs, call my Mum on speaker when unwell. I alerted crisis 20 mins plus in advance but it took my heart to stop for anyone to pay attention. 🤷🏼♀️#addisonsnotfortheweak
Thankfully most of my hospital experiences have been positive. Many folks with #adrenalinsufficiency aren't so lucky and some have to fight for even their basic steroid cover; without which they would die. Which is why I am so grateful to @AddisonsUK for representing us all.
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Not only that but a lot of #Addisonians are refused injection kits by their GPs, because they know so little about the disease. Having to fight for the right to life saving equipment is frightening and dehumanising. So why don't all the doctors understand??
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As you can imagine this is a bit more fiddly and off-putting to anyone who may unexpectedly attend us in a crisis. Truth is there isn't enough money in reasearching #AddisonsDisease to develop a kit that could have a more positive impact on our safety and wellbeing. #showyourkit
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@AddisonsUK @NHSMillion @Soc_Endo @lisashepherdcl1 @hormone_doc @pulsetoday @Soc_EndoNurses @ptsafetyNHS Hello all. I am fighting for the awareness of rare diseases. I have Addison's Disease and created the AI warrior to give people an idea of my daily needs and to spread awareness.I would love my character to be added to Fortnite for some special event.Please share so I get noticed
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