WHAT IS FIBROUS DYSPLASIA?
Aryana: As I mentioned in our last post, I was diagnosed with a rare bone disease called Fibrous Dysplasia last spring. People with Fibrous Dysplasia feel pain every single day. I was SO fortunate to have my growth discovered before I (God forbid) went blind. But others are not so fortunate and by the time cases are diagnosed, it’s too late to even have surgery because the risks are too high. It’s not exactly easy to have your bones removed…
Azadeh: There is currently no cure for Fibrous Dysplasia. It is not hereditary either. FD is caused by a mutation during fetus development and becomes more noticeable during puberty. It is not associated with any particular races/ethnic backgrounds and affects both men and women all over the world. Imagine if the bones in arms and legs had extra growth on them. Or in Aryana’s case, your skull.
WHAT CAN WE DO?
[left]Azadeh: Advocate & raise awareness!!!!!
Aryana: The Fibrous Dysplasia Foundation is a great way to help! It gives in-depth information on FD and answers a lot of questions regarding research and fundraising. For me personally, this foundation brought me closer to others who have(had) FD. They are also currently looking for volunteers to work with them!
Azadeh: The National Organization for Rare Diseases is another source for information and advocacy. FD is just ONE of many, many rare diseases people are fighting every day. Through NORD you can easily join a network, donate, become a state ambassador, and learn how to properly fundraise for them and other related organizations. They even have curriculums on their site for students of all ages! In the 5 minutes it took you (yes, YOU!) to read this post, you became more aware about Fibrous Dysplasia and rare diseases! If you want to make a small difference today, post the links to FDF and NORD on your social media! You never know who you might influence to make a positive change just by teaching them a few facts and figures![/left]
Aryana: I hope you all liked our first giving back post! If you, or anyone you know, is fighting with a rare disease please check out the links we provided for information and proper doctor referrals. Furthermore, if you would like to share your story, we would love to help raise awareness by posting profiles.
Azadeh: Please contact us if you wish to get involved in our giving back section at firstname.lastname@example.org or comment below. We have slowly built a pretty impressive audience platform in the last month and a half and we want to help you help others help each other! Thank you! <3