2020 for our 20th Chromosome
The First-Ever FDMAS Global Awareness Week!
FDF participated in the first-ever FD/MAS Global Awareness Week, February 20-28th, 2020. February 20th was chosen as the launch of this week of awareness and advocacy because both FD and MAS as well as related diseases such as Mazabraud syndrome all originate from a mutation on the 20th chromosome. The week culminated in Rare Disease Day, where the international community focuses on the thousands of rare diseases out there, including FD and MAS.
FDF went big for the inaugural year, asking patients to imagine a world free of FD/MAS and the painful symptoms that patients face every day, and also to contribute $20 to help make those visions into reality. Floods of responses came from our community, and FDF used those visions to help illustrate our community’s reality, and to raise awareness of the many ways FDF fights to improve the lives of patients and caregivers.
Some responses focused on the many ways that FD/MAS places limits on what you can do and where you can go. For people with FD/MAS, symptoms such as chronic pain, hormonal abnormalities, and restricted mobility present a significant burden. People with FD/MAS often have to travel great distances to find care from clinicians who are comfortable and experienced with this disease.
Other times the frustration was more internal. People expressed fear and uncertainty about facing a disease with so little information out there. This is actually what drives the FDF to do the work we do, with our newsletters, through encouraging research, and connecting patients to accurate sources. Access to information is critical for everyone, especially the rare disease community.Other responses focused on the fear and frustration of the unknown or the isolation of being different. Sometimes it was something external, like having restricted movement, walking with a limp, or feeling self-conscious over the way we look, especially when it comes to craniofacial FD. The face is such a public, and yet personal and medically complex area of the body. We feel so grateful that several researchers who are focused on the craniofacial region have already used the FDMAS Patient Registry to inform and design their studies.
Still, some responses rejected the idea that FD/MAS is something to be hidden from view. Many expressed pride in who they are and how much they’ve overcome. es, there is pain. Yes, there are too many questions, and yes, the answers are hard to come by and too thin to cover the enormity of our struggle. But there is so much to be proud of and grateful for in the #FDMAS Community.
FDF aims to give those living with this disease more than just hope, but also a way to actively fight back, to make it better. We are always looking for more advocates to join the fight. If you’d like to learn how you can help, reach out!