Blog Posts

Filming for CNN!

Throughout my youth I was very self-conscious, tentative, and reserved. My insecurities were greatly heightened by the progression of my disease, FOP, but I hid a lot of what I went through from anyone outside of my immediate family. It was too intimidating to imagine opening up about my struggles and sharing my perspectives on life with a rare disease. I haven’t really

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Spring/Summer Update

The past year has been filled with amazing opportunities, new experiences, challenging realizations, and unexpected setbacks. I’ve had wonderful days surrounded by friends as well as very difficult days due to FOP flare-ups. I haven’t shared much about my personal life in awhile, so I wanted to finally write about some of the things that have been going on. First off,

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Living with Limitations

What would life be like without any medical obstacles, serious physical limitations, or extra accommodations? I’d live independently. I wouldn’t need help with everyday tasks. I’d be able to easily maintain college classes or work a full-time job. I’d go on unplanned road trips across the United States with my friends. I would travel the world. My best friend is

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Finding Acceptance

Confidence and self-love can be challenging to maintain when you’re living with a disability. My disease, FOP, is progressive so I continuously have had to adapt to new physical limitations. I’ve struggled with body issues and many insecurities throughout my life. Before social media, I had a difficult time finding acceptance – in both society and within myself. The Twitter

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Summer/Fall Update

My last blog post was in late May, about a month after a very sudden FOP flare-up began in my jaw. In just three months I went from having over one inch of jaw mobility to less than one centimeter. This progression affected many aspects of my life — primarily my diet, but also talking at length and being able

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  • Ive been home for two days and Im already planninghellip
    4 hours ago by p0sitivity I’ve been home for two days and I’m already planning my next trip to California ‍♀️  #typical 
  • Zoo day
    5 days ago by p0sitivity Zoo day ♥️
  • I was interviewed and filmed yesterday for an upcoming projecthellip
    1 week ago by p0sitivity I was interviewed and filmed yesterday for an upcoming project that the International FOP Association (IFOPA) is putting together! It brought back all the memories of being filmed for CNN last year ❤️ so grateful to be able to share my story and help raise awareness of FOP!  #fibrodysplasiaossificansprogressiva  :…
  • Yesterdays adventures
    2 weeks ago by p0sitivity Yesterday’s adventures
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  • Today is the first annual FOP Awareness Day in Connecticut!hellip
    2 weeks ago by p0sitivity Today is the first annual FOP Awareness Day in Connecticut! my mom shared our story during the church service and I was able to answer a few questions afterwards. So thankful for the wonderful people I was able to share this day with - the next couple of weeks as…
  • Happy 21st birthday to my best friend!!! Im beyond proudhellip
    3 weeks ago by p0sitivity Happy 21st birthday to my best friend!!! I'm beyond proud of you and so thankful to know you. I love our friendship and all of the crazy adventures we've shared so far. Our memories are truly some of my very favorites. Whether we're wandering the streets of Portland, ME during…
  • Cabin circle  the true magic of Camp I havehellip
    1 month ago by p0sitivity Cabin circle - the true magic of Camp. I have so many childhood memories of walking up this path hand in hand with my new friends and counselors I adored. We'd chant the cabin cheers we memorized, determined to be the loudest so we could be the first ones into…
  • My baby Prancer turns 14 today!! Ive been feeling especiallyhellip
    2 months ago by p0sitivity My baby Prancer turns 14 today!! I've been feeling especially sentimental and emotional lately thinking back to his adoption day in 2003. I was only 10 when we got him & I'm now 24. He's been with me in every Connecticut town we've lived in. He was my greatest comfort…
  • 2 months ago by p0sitivity