Top Tweets for #everydayEB
🩹🦋 We asked the #EpidermolysisBullosa (EB) Community for their tips, tools, and techniques for organizing wound care supplies. We’re excited to share these gems with you as part of our #EverydayEB Peer-to-Peer Tips series!
➡️ https://t.co/YbNiSOZj6D
Call for #EverydayEB Peer-to-Peer Tips is back, & our next topic is Traveling with EB! ✈️🧳️ When living with EB, traveling can have an impact on our health and well-being. Share your pro tips for preparing for travel, during travel & at the destination: https://t.co/I1HbG4MqYe
“Accessories are your friends!�� 🦋 Katherine shares how she balances comfort with style as someone who lives with Recessive Dystrophic #EpidermolysisBullosa: https://t.co/kGmQuwjjtq
#EverydayEB #PeerToPeer #P2P
📢 Clothing & Fashion Tips are first up in our #EverydayEB P2P Series. Tell us your EB-friendly fashion tips! Favorite hacks, fabrics, or brands? Aids for getting dressed and protecting your skin? Share by replying to this tweet or via the short survey at https://t.co/DnXZGwMvkq
Today's the final day of #EBweek! Thank you for putting in the extra effort this past week to promote the need for a cure, spur advocacy, and raise funds for those with EB. Special thanks to the community members who were part of the #EverydayEB campaign: https://t.co/6UCkl44nup
"Despite the constant pain from moving and walking, Salim loves to dance! It does cause him blisters and pain, but Salim will not let [that] stop him from getting his groove on!" Read more + share Salim's #EverydayEB story in honor of #EBweek: https://t.co/FiankPolH9
![debraOfAmerica's tweet photo. "Despite the constant pain from moving and walking, Salim loves to dance! It does cause him blisters and pain, but Salim will not let [that] stop him from getting his groove on!" Read more + share Salim's #EverydayEB story in honor of #EBweek: https://t.co/FiankPolH9 https://t.co/CfLXeya0sA](https://pbs.twimg.com/media/Dqs5SbxX4AArVbb.jpg)
"This disease doesn't 'magically' go away when you're an adult. When I turned 18 or 19, a lot of my funding & hours were investigated just because I wasn't a child anymore and I 'cost too much money.'" Read Morgan's #EverydayEB story in honor of #EBweek: https://t.co/FiankPolH9
“I want people to see me as someone who shows strength and smiles despite the daily suffering.” #EverydayEB #EBweek @debraOfAmerica https://t.co/xcgG5mFbiT
"I wanted my picture taken by Ari b/c I was feeling happy & excited that day by being at the [debra Care] Conference. It was such a great feeling to be around people who KNEW what life with EB was like." Share Kathy's #EverydayEB story in honor of #EBweek: https://t.co/zCRLwKAiRB
![debraOfAmerica's tweet photo. "I wanted my picture taken by Ari b/c I was feeling happy & excited that day by being at the [debra Care] Conference. It was such a great feeling to be around people who KNEW what life with EB was like." Share Kathy's #EverydayEB story in honor of #EBweek: https://t.co/zCRLwKAiRB https://t.co/hcf7q2Qw4m](https://pbs.twimg.com/media/DpvJTNHWwAAO-rf.jpg)
"The fact that I was the Valedictorian of my graduating class... is very shocking to people because once they see me they assume that I have something going on with my brain." Read more + share Julio's #EverydayEB story in honor of #EBweek: https://t.co/zCRLwKAiRB
Next week is the start of National #EpidermolysisBullosa Awareness Week! @debraOfAmerica is calling on all of us to share in its goal of promoting #EBweek and the #EverydayEB campaign, which celebrates the diversity of the EB community. https://t.co/NZ6HNw8hg5
"We chose to take these photos in hopes to show that not all EB types are the same. Yes, we have EB, but we don’t always look like it." Read more + share Melanie's #EverydayEB story in honor of #EBweek: https://t.co/4QRykmqALA
"I got my photo taken for EB awareness, because people look at me and say that I don’t 'look' like I have EB. I am treated like my EB isn’t 'bad enough'." Read more + share Cyndi's #EverydayEB story in honor of #EBweek: https://t.co/4QRykmqALA
I have EBS. My daughter has EBS. It look me 29 years to be diagnosed. We need to bring awareness to this horrible disease. EB Awareness Week is coming! #everydayEB #lifewithEB #lifewithbutterflywings #Releasethebutterflys @debraOfAmerica
"Although some days I struggle to walk, I still give 100% effort in sports and I am very competitive." Read more + share Amaya's #EverydayEB story in honor of #EBweek: https://t.co/pzdDk2NSYD
"People are always amazed at what I can do, however when it comes to getting myself dressed either for bed or for the day, I can’t do it by myself." Read more + share Ellie's #EverydayEB story in honor of #EBweek: https://t.co/pzdDk2NSYD
"The day Ari took those photos I was so excited and nervous...he keep telling me to not smile, but every time I look at the camera, I always smile." Read more + share Guadalupe's #EverydayEB story in honor of #EBweek: https://t.co/LWiUU9NTEu
"Disabilities and hardships come in many different shapes and sizes; the thing about EB is that it is very visible…I get treated like I am a little kid even though I'm 21 years old." Read more + share Kourtney's #EverydayEB story in honor of #EBweek: https://t.co/LWiUU9NTEu
"I wish I didn't have to explain my illness, period. But as I've grown, I've realized that the only & most efficient way to properly raise awareness is through explaining." - Ariana (right). Read Ariana & Bianca's #EverydayEB stories in honor of #EBweek: https://t.co/GVkqCOZ9Ag
"Teagyn's personality makes you forget about her EB sometimes. She continually keeps fighting EB with a smile." - Malinda Grant, mom to 5-year-old Teagyn, RDEB. Read more + share Teagyn's #EverydayEB story in honor of #EBweek: https://t.co/KCO0E9KovJ
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