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Zebra or Unicorn 🦄

If you have been in the “rare disease” world with us, you may wonder what the reference is to the zebra. When you hear hoofbeats, we are trained to think horses, not zebras … 🦓 This means that in a...

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Beating the odds

Five years ago, October 10th, I was told I had 1-5 years to live. I remember sitting there, so full of hate and anger. Thinking to myself, “if they had just listened to me, I wouldn’t be here” It took...

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I have news …

Five years ago I was told I had 1-5 years to live. I sat in a white office with the same diabetes posters and bland medical facts I had looked at several times, and contemplated how angry I was. Angry...

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Your Questions…

A few weeks ago I asked you guys to ask me anything, I’m so happy to share with you the answers to your questions! Watch below Like and share! Follow me on Facebook & Instagram: @pheovsfabulous

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Just because I have a terminal illness…

Doesn’t mean I’m terminally ill, confused? I was too. I still might be, but I think it’s time someone explained what it is to have a terminal rare disease. With rare disease day approaching, I’d like...

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I am Rare: 2021

If you had asked me six years ago what I was going to write in 2021 on rare disease day, I’d have told you I wouldn’t be here to share. I’d have told you what they told me, I maybe have a year left....

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Reclaiming my power

I’m feeling very inspired lately, my urge to make a difference is strong. I sometimes get an overwhelming feeling of responsibility to prevent what happened to me, from happening to someone else. I...

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Let me re-introduce myself…

can·cer ˈkansər/ – disease; causing the body and mind to adapt, overcome, and embrace change. Quality of Life:  What do these three seemingly simple words mean to you?  Someone who is living with a...

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Caregiver Chats: our story

www.instagram.com/tv/CTV0qRilPhD/ If you’d like to watch the replay of our LIVE chat, I interviewed my husband for the first time ever about our journey. He shares some incredible insight about how you...

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A lesson in life and death

“Being given this gift is a rare insight not many get to have, until it’s too late to apply it. I have the pleasure of giving a glimpse to all of you now” pheo vs fabulous Being palliatively treated...

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