Today is Rare Disease Day!!! 🦓
Rare Disease Day is technically February 29th because it’s a leap year the most rare day of the year. But celebrated on 2/28 on the non leap year years!
Rare Disease affects more than 300,000,000 people worldwide.
I happen to be one of those 300 million! ☺️
If you know me then you know that I got really sick when i was just 8 yrs old. I presented like I had a typical virus, every time I’d eat I would throw up. That labeled me as having an eating disorder & it started my chronic illness journey!
I wont go into a lot of details as that would become a novel & right now I dont haveve the energy or brain power to think. Nor do I want to stir up my medical PTSD.
So what diseases do I have that make me part of the RARE disease population?
* Achelasia (a disease of the Esophagus)
* CIPO (Chronic Intestinal Psuedo Obstruction)
* SBS (Short Bowel Syndrome)
* Bronchiectasis (Lung Disease)
* Intestinal Failure
In short I cant eat & have been dependent on IV nutrition for most of my life. I was one of the first children sent home on TPN (Total Parenteral Nutrition) from Stanford in 1988. I had 2 major surgeries on my Esophagus to try & fix the Achelasia. Unfortunately, neither surgery worked. My Vagus nerve was cut which lead to motility issues throuout my GI tract. Due to the motility issues causing bowel obstructions (CIPO) I’ve needed many bowel resections. Those rescetions of my small bowel left me with SBS & Intestinal Failure!
Over the years I have learned to advocate for what I need to be able to live a somewhat normal life. Dealing with the healthcare system is not easy, but thankfully I’ve had my parents by my side this entire time.
Despite all the bad things that have happened I consider myself blessed 😇 Ive taken on a role as a patient advocate which I absolutely love doing. I started a FB TPN-Total Parenteral Nutrition Support Group in 2011 with the intention of connecting, providing support & education to other TPN consumers/caregiversers who are on similar paths.
So today I share with your a glimpse of my story & what its like living with multiple rare diseases!
#rarediseaseday #rarediseaseawareness
