I choose to be a local activist for awareness and change

Posted July 27, 2020

Pashondra has her port accessed in hospital, wearing a face mask, due to complications from Ehlers-Danlos syndrome

My name is Pashondra James, I am 45 years old and from NC. I am the mother to two beautiful angels, Myecia Abri and Aric Isaiah James who passed away at birth due to EDS related complications. I did not know until 2011 that I was fighting a genetic illness called hypermobile Ehlers-Danlos syndrome (hEDS).

I also have some vascular issues, PoTS, Mast Cell, suffer from migraines, along with other comorbid illnesses. It has caused complete hearing loss in my left ear, several GI issues, heart problems, and excruciating daily pain. I had several symptoms and illnesses as a child but the dots were never connected. It took 11 years to get diagnosed once I actively sought help for my health.

I can’t remember what it feels like to wake up and go without everything aching in my body or making plan adjustments. My joints dislocate daily causing pain. It has made me change how I live my life. I have had to leave corporate America due to disability.

I have several items in my pain toolbox that help make it a little easier to bear, but it does not take away the pain or stabilize my other issues the way cannabis can. I use heat and ice, a tens unit, braces to stabilize my joints, creams, and the dreaded pharmaceutical intervention and I also have a medical Port for IV access due to faulty veins.

I choose to be a local activist for awareness and change. Those of us that are fighting every day need access to doctors who are familiar with the illness that has taken over every aspect of our lives. I look forward to a day when I can choose a local doctor who is aware of EDS and also willing to learn because we are all different.

I enjoy sharing information about my illness in the hope that something I said or did will make it easier and quicker for the next person to get diagnosed. When I was first diagnosed I didn’t see a lot of people that looked like me spreading awareness. Personally, in the beginning, I did not want to say a word in fear of how doctors treated me – ironically now it’s that same exact reason that makes me want to scream out about awareness! We are all #Zebrastrong

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