Today is #rarediseaseday which falls on the rarest day of the year, February 29th (Leap Year)!
Did you know the population of people with rare diseases equals that of the world’s 3rd largest country. 300 million people worldwide are living with a rare disease. 😳
I was 8 yrs old when I was first diagnosed with Achalasia, a disease of the esophagus that made it impossible for food to go down into my stomach. As I’ve got older I’ve been diagnosed with a few other rare diseases like Bronchiectasis (lung disease), Short Bowel Syndrome & CIPO (Chronic Intestinal Pseudo Obstruction).
I wasn’t suppose to live past 11 yrs old, but here I am still living, breathing, walking & talking! Everyday is a gift from God despite the fact I live with chronic pain and require IV nutrition to keep me alive! I’m beyond blessed for having amazing parents who have been the ones to keep me alive all these years!
It’s the community of friends I’ve made who are dependent on TPN (Total Parenteral Nutrition) & EN (Enteral Nutrition) that show me everyday what an amazing spirit humans have to keep going despite the difficult days, frequent hospitalizations, line infections, flare ups, surgeries, crappy care, having to advocate for yourself when you don’t feel well and the list goes on!
Remember social media is just a small glimpse of our days, you don’t see the real struggles we go through, or what our caregivers go through! To be honest, everyday is rare disease day in our book, we never stop living it, we never get a break from it, we cant plan things in advance because many times we will have to cancel, not because we want to, but because our bodies just won’t allow it!
#RareDiseaseSay2024 #rarediseaseday #raediseases #achalesia #shortbowelsyndrome #sbs #cipo #chronicintestinalpseudoobstruction #tpn #tpndependent #bronchiectasisawareness
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