Stories

My Zebra Rare Tale

February 9, 2024

by Brenda Fregger

Have you ever had orthopedic issues, a twisted ankle, a sprain, tore something, had surgery, injections, in a brace, on crutches? Seriously painful, right? Imagine having 14 surgeries, multiple torn tendons in every joint, more painful procedures than you can remember and your wardrobe often consists of multiple braces…

Have you ever had an injection of medicine or a vaccine? The injection itself hurts, then your arm and now you feel like crap, it’s horrible- right? Imagine having an injection like that every week…

Have you ever had the flu or a stomach bug? Nauseous, vomiting, diarrhea and you feel absolutely horrible. Imagine feeling like this 2-3 days a week, every week…

Have you ever been in the hospital hooked up to an IV? Really uncomfortable, right! Imagine doing this every 8 weeks…

When you get dressed, you just pick out something and put it on, right? Imagine sitting on your bed next to a pile of clothes that you tried/wanted to wear, but nothing fits over your braces and you just want to cry because you’re stuck with frumpy sweats, Again…

When you’re sick and go to the doctor, you have tests done and they figure out what’s wrong, right? Imagine being sick and in pain for over 6 years, seeing several doctors and specialists and none of them know what was wrong with me, until I traveled across the country to see yet another specialist and he diagnoses me with a disease so rare most doctors have never heard of, even fewer have ever seen or treated and no one else has with no cure, treatments or medications…

Can you imagine what this is like? Neither could I… until I was forced to live with a rare incurable inflammatory connective tissue disease.

I always struggle to tell my story, so complicated and rare that most people would be lost by the 2nd sentence. My doctors don’t even fully understand it! How on earth am I going to explain it to random people in the grocery store who ask about the zebra tail.

The Zebra Tales campaign helped me to put it into a different preceptive — telling my story using circumstances everyone can relate to! Instead of trying to effectively explain it standing in the checkout line, I put it in this story.

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