Dee's Journey with Scleroderma and PAH

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 Project Scleroderma in collaboration with us here at the SRF. "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.
#sclerodermaresearch #srfcure #rarediseaseday

[@Strong_selflove]

Thank you for spreading awareness Dee❤

[@helenaevans9884]

Praying for a cure sharing for awareness 🙏🙏

[@Strong_selflove]

Beautiful video ❤

[@lillyrocks2011]

When are we going to have a medication for our skin? To control or to stop the skin fibrosis, tightening. This is one of the most cruel and weird of the autoimmune diseases. A disease that turns into mummies. Please, scientists , pharmaceuticals, give us hope. Help us!! 🙏🏼🙏🏼