When we raise awareness about FD/MAS, we often talk about the clinical diagnosis and the scientific explanation of the disease. This summer, let’s tell our stories instead.
What’s living with FD/MAS really like? What obstacles do you face that people may not see or understand?
#BreakTheSilence by clicking below.
For tips and samples of what to say, see below.
See what others say to #BreakTheSilence
Frequently Asked Questions
What should I say?
- Say who you are (this can include your name, age, and location)
- Share the diagnosis (McCune-Albright Syndrome? monostotic/ polyostotic fibrous dysplasia?)
This section is where you share what the clinical symptoms of your disease look and feel like in your daily life. Make it personal to you! What obstacles do you face that people may not see or understand? Don’t hold back! Here are some examples:
- Some days I feel a searing pain in my skull that hurts so badly, I can’t work or spend time with my family. I can’t control when the pain comes or how long it lasts. It totally disrupts my life and career.
- I have to tell my son he can’t ride a bike, or play soccer with his friends, because a simple bump could break his femur. He’s broken it 9 times already and he’s only 12 years old.
- My daughter takes 5 different medications every day to help manage her pain and hormones.
- I hit puberty and got my period before my first birthday because of MAS. I’ll take medication to control my hormones for the rest of my life.
Call to action: This is where we ask your contacts to visit healourbones.org
- Please share this video & visit healourbones.org to join the fight.
How will my video be used?
The FDF plans to feature submissions on this page, and share submissions over social media, on our donation page, and via email. Additionally, we plan to use clips of different videos to create a summary video that captures some of the highlights of your stories. We intend to reach out to local media outlets to share these videos as well.
Please note that while those are our immediate plans, by uploading a video, you and all people in the video consent to the use of quotes, and the taking of photographs or video of the people in the video by representatives of the Fibrous Dysplasia Foundation. You also grant the FDF the right to edit, use and reuse those products for educational, public service, health awareness and/or nonprofit fundraising purposes, including in print, on the internet and other forms of media. You release the Fibrous Dysplasia Foundation and its agents, members and employees from all claims, demands, and liabilities whatsoever in connection with above.