This section of the website is basically a "vent" page about the pet peeves warriors have about Fibrous Dysplasia/MAS

Think those same thoughts sometimes? Want to add your pet peeve to the list? Send an email our way!

- "People attempt to "fix" us with remedies like extra calcium."


-When people say, "So it's like brittle bone disease"


-"When people say to me that my mum should have more supplements when she was pregnant with me. 
Also when the doc said this disease doesn't cause pain. 
And last but not least 'take more calcium and you'll be fine."


-" When someone says, "I know someone who has that!" I always get really excited and want to meet them. Big let down when I find out they're talking about fibromyalgia


-"Are you all healed up now?". It doesnt go away!


-"Seeing me on crutches or in a wheelchair. "What happened!?" Nothing - *new*. I live this way off and on all the time."


-"The fact that all doctors read a page about it in med school, but nobody knows anything about it. Even most orthopedists (in my experience) have never treated a patient with FD.


-"When I have to explain to my drs what FD is. Sucks! Or worse when they pretend to know what it is and don't:("


-" it's when doctors assume that if surgery is not imminently required, that no treatment is necessary - not that the treatment hasn't been developed yet."


-"Hate being told this doesn't cause pain. The worst is when I'm told I don't look sick."


-"When you make one teeny tiny complaint and people say 'oh i have it worse' or 'oh you could always be worse off'


 -"When my Doctor says I should accept FD the way it is as there is nothing that can be done about it! It also when strangers look at me in awe of my FD and may make unintentional comments about it which may be embarrasing sometimes!"


-"When my neurosurgeon says my pain and vision problems have nothing with the FD, half the norwegian population has the same problems. Likewise, when he says that in Norway, we don't believe that american doctors are right, concerning pressure on the spinal cord and chiari-like symptoms."


-"When you're in a wheelchair and everyone assumes you're paralyzed. lol"


-"My pet peeve? When I'm bedridden, but nobody does a darn thing to help out around the house... It's like being excited when you get back on the feet, only to walk or crutch out of the bedroom to see you've basically been punished lol"


-"I have to educate whomever treats me. They only know its a bone disease."


-"When people tell me I don't know what pain is and to just wait until I get older."