Rare Disease Day 2021 Feb 28
Why are people with Rare Disease called ZEBRAS?🦓
When doctors are in med school, they’re taught that when you hear the sound of hooves, it’s probably a horse.
That means, when a patient gives them a list of symptoms, and it sounds like a common condition, then it’s most likely that common condition.
HOWEVER, there are exceptions to that rule.
Sometimes the sound of hooves are actually zebras.
We as patients may present like we have one (or several common conditions), but can actually have a rare disease that’s difficult to spot, hard to diagnose, and even harder to treat.
We are called zebras, and in the Rare Disease world, zebras have MANY different color stripes.
I do not know why it is that we must wade through tragic circumstances to find truth. We nearly drown! But under the water, there are pearls. I hope in writing this blog, more will come to the surface. Over the past 15 years living with chronic pain,
patient advocacy has had a powerful effect on my life through meeting so many remarkable teens, women and men: SURVIVORS. These individuals are HOPE personified. I wish to honor them in the same spirit they have encouraged me to press on.
Eight years ago, I became bed-bound from a variety of secondary chronic illnesses. A procedure meant to help the pain condition I had been managing for several years- went bust #BIGTIME. Over the years, my entire life has changed. I have changed, but I am still striving to live my best life possible. Along with sharing inspiring pieces about spiritual wellness and finding quality of life inside of ongoing illness, I also share health research, awareness information, poetry, memes, art, and this blog is also an attempt to put my own pieces back together. Welcome to A Body of Hope, and thank you for visiting. [Complex Regional Pain Syndrome/ RSD, Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Chronic Intractable Migraine, Cluster headache, Trigeminal Neuralgia, Occipital Neuralgia, Hypersensitivity to Sound & Light, Fibro, CFS/ME, Cerebrospinal Fluid Imbalance......blah, blah, blah] >>> P.S. My headgear is protective for pain. I just rock it hard ;)
I’m proud to be your zebra friend on this journey with our rare diseases, beautiful lady.sending a gentle hug 💞🤗
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