Sarah Mumper, 28, who has Fibrous dysplasia, lives in fear that even the most mundane of tasks can leave her with another fracture and often spends her days wrapped in casts
California shares reality of living with rare bone condition
A young woman has shared the agonizing reality of living with a rare bone condition that make her bones so fragile they break at the slightest movement.
Sarah Mumper, 28, lives every day with the constant fear of another fracture with even the most mundane of tasks being a gamble. Due to her rare condition, Sarah more often than not spends her life wrapped up in casts – forcing her to be mindful of the activities she does.
Frustrated Sarah, from Sacramento, California, said: “I’m showing how frustrating it can be living with a rare bone disease. I really just absolutely despise about my disease; I can be doing absolutely nothing and break my arm.”
Sarah shared her story of living with a very rare nonhereditary genetic disorder called Fibrous dysplasia (FD) and McCune-Albright syndrome. Fibrous dysplasia is a congenital condition that affects bone growth and development.
Whereas McCune-Albright syndrome is a disorder that affects the bones, skin, and several hormone-producing tissues. Sarah, who works as an administrator, has revealed the reality of living with these conditions.
Sarah explained how she could simply be doing nothing at home and end up with broken bones. She describes her bones as significantly weaker than regular bones and is subject to breaks and fractures more frequently than most people.
Her condition in recent months however has worsened and she was forced to take a four-month TikTok hiatus due to her illness. McCune-Albright syndrome is estimated to occur at a frequency of one person in 100,000 to one person in 1,000,000 individuals worldwide.
She said: “Welcome to the chaotic world that is my life. I was doing a simple task of getting out of a truck while in Alaska and breaking a bone resulting in flying and getting airlifted to Juneau before finishing my trip and flying home.
“It’s frustrating it can be living with a rare bone disease. I have been taking a four-month absence from TikTok, mainly because I haven’t been in the mood to make content.
“Why? Because I’ve been broken for four months and I’m just now feeling well enough to scratch the surface of getting back into it. So those of us who have FD, think of it as having soft bone, like a bar of soap. Regular bones you can cut through a bone saw. FT bone, you can take a scalpel and scrape it like its nothing.”
