Top Tweets for #EBSimplex
"When I was born, not much about EB was known".
Thank you Jennifer for sharing your #myEB story. Visit https://t.co/qSSMCVmfEw to read more of her story or to share your own.
🦋🦋
#EBStories #FacesofEB #CureEB #ResearchtheCure #StopthePain #HealEB #FightEB #EBResearch #EBSimplex
Not a particularly emotional person but took my son to @BWC_NHS for his #EBSimplex check up & was told we’re doing “a great job & no concerns” felt like crying happy tears🥲. Made me realise how important it is to tell patients/carers the positives of how they’re doing
In our latest EB Stories blog, Carly Fields, mum to Naomi, 10, who has epidermolysis bullosa simplex (EBS), shares her family's story of living with EB and the path to getting a diagnosis.
Read Carly & Naomi's story: https://t.co/2e8q7msw0a
#EpidermolysisBullosa #EBSimplex #EB
EB Simplex (EBS) is the most common form of EB whereby the missing protein, which would usually help bind the skin together, occurs within the upper layer of the skin – the epidermis.
Find out more about EB Simplex: https://t.co/ka4WlgHb3Q
#EB #EpidermolysisBullosa #EBSimplex
A benefit of having ME.
I have Epidermolysis Bullosa Simplex which causes my feet to blister easily. Pre-ME, a heatwave would’ve been a disaster for my feet. Having severe ME though, means I’m not on my feet enough for them to hurt! Yay! 🤔
#PwME #MyalgicE #EBSimplex #Heatwave
Hiking Blisters?! To be so lucky!
As most hikers find out, blisters are a definite downer on a hike. But there's more.......... you should be so lucky!
https://t.co/7xqKorEDVI
#blisters #epidermolysisbullosa #EBsimplex #armaskin
If I ever see a Dr with this message in their office, they’d no longer be my Dr. Without my google searches I wouldn’t have my ME or #Endometriosis diagnosis, not to mention my #EBSimplex, I’ve yet to meet a Dr who’s even heard of it.
#PwME #ChronicIllness #Disability #Ableism
Incredible. I never thought I’d see one in the wild
I frequently experience disbelief in the face of my disabilities and how they affect me. This is bad enough, but the total dismissal/erasure of my reality is especially bizarre. Two of my experiences...👇1/
#Disability #ChronicIllness #EBSimplex #PwME #MyalgicE #Ableism
What on earth motivates someone to tell someone else they aren't ill? Is it possible they weren't listened to or believed about something at an earlier point in their life? It isn't healthy human behaviour. #SundayThoughts
We’re kicking off our #EBAwarenessWeek Member Events by hosting an informal chat that will give Members living with #EBSimplex the opportunity to connect with others across the UK with special guests from the EB experts at @GSTTnhs.
Twitter baby.💛 #EBSimplex
Written a few words on living with EB Simplex, with the objective of raising awareness of the condition.
Please feel free to read -
https://t.co/7NBzQSqU7P
#EBSimplex #epidermolysisbullosa #DEBRA🦋 @CharityDEBRA 🦋
Great recognition from @BBC to build global awareness of #epidermolysisbullosa. We support you, Rhys, and the many others who fight a daily battle with #RDEB and #EBSimplex. https://t.co/r7J1wYd9RC
@arisonsned @sashanimmo @MEwarrior_au Whereas I need to move to Iceland! I’ve never been a sun person, but I also have #EBSimplex, so sun equals sore and blistered feet for me. I’d be very happy living somewhere that never goes above 16°C, and even then, I only want a handful of 16°C days a year.
Yep! As well as having ME I also have a genetic skin condition called #EBSimplex, the main symptom being painful and blistered feet. So many times in my life when I’ve been making plans with someone, and I’ve told them I that I couldn’t walk to wherever we were going, I’d have to
I’ve never heard of a single disabled person appreciating the phrase “It’s not THAT far...”
I wish the weather was reported without bias. Some will no doubt enjoy the heatwaves, chronically ill folk like me, whose health worsens as the temp rises, will not. For me it means misery, pain, isolation and incapacitation. It feels ableist. #PwME #ME #EB #EBsimplex #Ableism https://t.co/4r7jSS1EyW
UK could enjoy up to eight more heatwaves this summer, say forecasters https://t.co/LBO3PkYnpi
@me_potslife I have a genetic skin condition that gives me very sore feet that blister easily (#EBSimplex). The benefit of having #MEcfs is no sore feet for the last 3yrs. But, if I’m ever able to be on my feet long enough that they hurt, it’ll be a good day! I’d take daily sore feet over ME.
Thank you @debraOfAmerica for supporting the DELIVERS study for treatment of #EBSimplex. More information here --> https://t.co/RlQcHtfiqs
Thanks to all the EBS patients, families & others that came though the lab today - great questions! @CharityDEBRA #ebsimplex #drugdiscovery
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