Good day to you all. I hope that everyone is safe, happy and living each day to the fullest.
Today is Rare Disease Day 2021 and I am, along with thousands of others like me, trying to bring awareness to to the many, many Rare Diseases out there with no cure. Many like myself, are fighting for their lives each day. Some, again like myself, are fighting with debilitating pain and the lack of understanding about the origins of the diseases that we are suffering with. Constantly feeling like guinea pigs, participating in clinical trials trying to find the correct medication to treat our illnesses. Fearing going to the hospital emergency rooms because of the mistreatment or lack of treatment, because there are too many doctor’s out there who lack the necessary information about how to treat those with rare diseases.
Those that advocate for us venture to Washington DC, trying to achieve time on the floor in front of our officials to have them hear what our grievances are. We need funding for research to find cures to treat our diseases. We need national attention so that doctor’s gain the education on how to treat each patient individually and not clump our symptoms in a universal category. No two patients symptoms affect them the same. Which why Sarcoidosis Warrior’s classify ourselves as Snowflakes, and Fibromyalgia Warrior’s call ourselves Butterflies. As you can see,, I represent both along with my fight with Rheumatoid Arthritis.
It bothers me when I am treated in the E.R. with overall symptoms of Chronic Pain and a host of other symptoms, yet the E.R. Physicians want me to focus on just one symptom which defeats the purpose of my needing the E.R. in the first place.
So, in honor of today’s nationwide awareness campaign, I’ve created a couple of short videos that speak to our plight.
Peace and blessings to you always and forevermore,