I have posted this video before. I made it to help raise awareness for EDS and in light of it being (the day after) Rare Disease Day I thought I would share it again! While I am happy that there is a day to recognize rare diseases, awareness is important everyday. With awareness and education there can be a cure.
EDS is not the only rare disease that I live with. I also have Chiari Malformation which is a structural defect in the cerebellum. It consists of downward displacement of the cerebellar tonsils through the foramen magnum (the opening at the base of the skull). The displacement sometimes causes hydrocephalus as a result of cerebrospinal fluid (CSF) outflow.
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| Normal vs Chiari |
-Headache- pain in the back of my head, feels like a balloon is expanding in my brain and is going to push my eyes out
-Neck pain
-Dizziness- especially noticeable when changing positions from lying down to sitting or standing up
-Tingling/numbness- feeling on the left side of my head that comes occasionally and travels down the back of my ear (short lived); also have numbness or weakness in my legs and arms
-Ringing in my ears and the pressure feeling of needing to pop them (similar to the feeling on an airplane)
-Focus/concentration problems
-Sensitivity to light- light makes my head worse
-Eye pain/soreness
-Difficulty swallowing
-Vertigo at night
-Chills
-Nausea
*and more
*For more information and links for EDS, Chiari, Neurocardiogenic Syncope (Dysautonomia), and CRPS please check the tabs at the top of the blog.
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