Rare Disease Awareness - Dee's Story

February is Rare Disease Awareness Month. It's an opportunity for us to come together and raise awareness about what it means to live with a rare disease like #scleroderma. To kick things off this month, Dee (who was diagnosed with scleroderma in 2012) shares about her journey with this disease and one of its complications, another rare disease called pulmonary arterial hypertension (PAH).
"Awareness for scleroderma and PAH is so important to me because it is personal," says Dee in this short film produced by @projectscleroderma in collaboration with @srfcure. "I will speak about PAH and say scleroderma until EVERYONE knows their names. Together, we can find a cure."
Thank you, Dee, for sharing your story and passion for raising awareness. As Dee explains, we can make real progress if we work together-both in raising awareness and advancing research.
This is why our two organizations have joined forces to #sayscleroderma. Our goal is to bring attention to this disease, its complications, and the need for urgent research. And that's also why we need YOUR help. Together, we can make a bigger difference than we ever could alone.
Join us in spreading the word about what living with a rare disease means to you-on social media, in your community, or in one-to-one conversations. You can, and will, make a difference.
#scleroderma #rarediseaseday #raredisease #awareness #sayscleroderma #srfcure #projectscleroderma

[@swst]

Keep on pushing & keep on fighting!!!!!!

[@mycarefriendsnetwork]

Thanks for sharing your story, Dee! ♥We stand with you and your family -- as our founder's mom has Systemic Scleroderma and along with that came ILD, CKD, and many other complications. She's been fighting for almost 6 years. Keep up the fight and all the great awareness building you're doing!

[@GregWittstockThePondGuy]

Stay 💪

[@johnjenkins129]

God Bless you and your Family 🙏🏽💛

[@Italianqueen]

Thank you for sharing your story,I too have scleroderma and ILD,and a few other things related or from the scleroderma. a wife and a mother to seven children! I just went through something quite hard. I was pregnant in September 2022 and got Covid again. And started to get extremely sick and had to be put under generally anesthesia to have an emergency C-section, and I didn’t wake up I had aspirated, I was put on life-support ECMO medically induced coma. A bunch of other things also went wrong and I was in the hospital 97 days not ever meeting my daughter. And I had to relearn how to walk, swallow,etc which is where I finally got to meet my baby girl at the rehabilitation center. I too am on oxygen,It’s been a long year and a half which my fight is far from over. I’ve tried so many things and I’m willing to keep trying them. But it is so hard being a wife and mother and finding a way to navigate through the scary disease. Best of luck to you and your family!

[@lillyrocks2011]

This terrible condition scleroderma needs more research. There's no enough investigation. It's an absolutely cruel condition. I'm so scared of this. 😢 I hope we can have a treatment to stop the collagen over production. 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼🕯️🕯️🕯️🕯️🙏🏼🙏🏼🙏🏼🙏🏼