28/02/2020
To attend as an advocate representing has been a honor and priceless opportunity where I have been able to share my story with those who have the power and resources to positively progress what is being done for the rare disease community.
Diagnosed with Type 1 Narcolepsy back in 2014, I had unknowingly been fighting the never-ending battle that is Narcolepsy dating as far back as 1999.
Each day I wake up and am forced to choose a chemically dependent lifestyle. I take 4 medications, 3 of which being controlled substances to combat my debilitating symptoms only to live a somewhat independent life. Although my Excess daytime sleepiness is always a lingering terror that hides behind the lids of my eyes, to have too still experience the sudden occurrence of a cataplectic attack is one that is still debilitating beyond what most can fathom.
When Someone experiences a cataplectic attack it is triggered by a sudden spike in emotion, and for me it occurs when I am expressing happiness or laughter. When enduring cataplexy, my body goes into full state of sudden paralysis where I uncontrollably collapse and am left conscious unable to see, speak, or move until the triggering emotion has passed.
There have been times where I am alone and in a situation where my safety is in jeopardy, I have hit my head and been left in public to have all the eyes of the people gander at my seemingly lifeless body. Ive had individuals portray themselves as โfriendsโ who later would strive to induce an attack only to laugh at me as I remain helpless.
Although there are treatments available and have granted me a greater quality of living, more needs to be done.
which is why I stand as an advocate in support of increased funding for FDA Orphan Products Clinical Trial Grants Program and Natural History Grants Program.
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Thanks to and for meeting with advocates during
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I would also like to thank the amazing team with for being the pioneers behind
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โขโฃ @ Washington Capital
