Helping women obtain leadership positions through the POWER of their Voice. CEO/Founder of VICKtorious|Keynote|BSA|STEAM|Ed. #chronicpain#rare#MGwarrior#EDS
🎭✨ join us as we create The Laughter Lounge - where everyone believes the power of humor to face our daily challenges. It’s a place where punchlines dangle from IV poles, and 'seriousness' is left hanging at the door.
Join us in this comedy lounge
It’s #Dazzle4Rare2024 sharing info on the rare community around us & the great work they do. Check out @Ataxia_and_Me Alan & the team who do fantastic work raising awareness of Ataxia: https://t.co/ypMjJv5gQ3
@costplusdrugs Thank you - that is an incredible price for Northera. Speaking as a patient advocate and a patient from who has spent over 30 plus hours of advocacy to get Northera approved through my insurance company, after all other medications and treatments failed.
🎭✨ join us as we create The Laughter Lounge - where everyone believes the power of humor to face our daily challenges. It’s a place where punchlines dangle from IV poles, and 'seriousness' is left hanging at the door.
Join us in this comedy lounge
@sampson_dog Love this article. Peeta is almost always with me,however, some activities, such adaptive skiing, is not quite dog friendly. :-) During such activities as that or while snorkeling on vacation with my husband- like you, I had someone with my service dog.
@sampson_dog@CaesarsPalace So very true! I can be hard advocating when experiencing the challenges. I have found taking a moment to meditate w/ my service dog to be helpful & for those situations where I am personally struggling w/ a health challenge, following up communication platforms.
From compassionate walkers who understand the unique needs of a service dog, to the GPS tracking feature that lets me follow their strolls in real-time, Wag! ensures my furry friend is well-cared for when I can't be there myself. 🚶♀️🌳
#ServiceDogs#Inclusion
🏥🐾 Many of you have been curious about how I manage my service dog's needs while hospitalized. A crucial part of our routine is the amazing @WagWalking app! It's been a lifesaver (literally) for us. 📱
#ServiceDogCare#HospitalLife#WagWalking#DogLovers
@sampson_dog@j98bug@CaesarsPalace I’d love to help you as well @sampson_dog I’ve been able to advocate accessibility issues for my service dog and self in a variety of situations including schools and hospitalizations.
@CaesarsPalace@sampson_dog Thank you for being willing to listen, learn, adapt and educate. More often than the situations we encounter can be solved with communication! As one with a service dog, I greatly appreciate your adaptability.
@rarelikeher I see my diseases/disorders/challenges as part of me, part of my journey. My greatest source of strength (as they led me to my family and who I am today) yet also my greatest weakness, as it has left me battling for life &breathe more times than I can count
@kbfairness@LuxMeaMundiAM@TravelingHermit @RachelCurtis82 @THFC77777 @Lizzypop15 My first high school job involved converting medical files to microfiche, where I was trained by adults with developmental delays. From them, I learned about compassion, love, and impressive memory skills.- incredibly memorable experiences
Today is International Men's Day, a day to celebrate men in the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) community, and to raise awareness of men's well-being!
Our next men's virtual Let's Chat group will take place on December 14 on Zoom at 1:00 pm Eastern Time (US and Canada) led by our awesome volunteer @domenikpasquale - you can join with or without your webcam on, chat, or listen. The link to register is here: https://t.co/CPIzaHr2SK
We'd love to share more stories from men about diagnosis, health concerns, and what has helped you to live better with a type of EDS or HSD. Click the link to find the form to share your story: https://t.co/fbnTtVeNHT
We'd also love to hear what you would like to see more of on our social channels and website that you would find helpful. Let us know in the comments below. #InternationalMensDay #MensHealth #ZebraStrong #EhlersDanlosSyndrome #HypermobilitySpectrumDisorder
@alexandra_DBmed The more we speak out about it the more likely we are to begin to get representation in this arena - personally I was five units away from my law degree when I encountered serious challenges, and I am still finding a way to fight it
@alexandra_DBmed Don’t give up – I really had similar problems in law school and I’m still fighting the system, but don’t give up. There are many of us that have to use wheelchairs or that have challenges with EDS in post, secondary education, and find it difficult to find representation -