“I’m Lindsey and I’m from London, England. I live with multiple invisible chronic illnesses and have done for most of my life, but look perfectly healthy. The main ones are Ehlers Danlos Syndrome (suspected hyper mobile type), Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome and Aquagenic Urticaria. EDS (Ehlers danlos syndrome) causes dislocations and subluxations around 4/5 times a day which can be extremely painful. I have gastrointestinal issues, heart issues, endocrine system issues and much more. EDS is very disabling for me and is suspecting to be the cause of all my other conditions. PoTS causes me to faint, blackout, have chest pain, tachycardia, extreme fatigue, blood pooling, brain fog and much more. This condition really brings me to tears. PoTS tends to drag me down the most out of all of my conditions. Lastly... I am allergic to water. My story about my allergy went viral online and as expected, I received a lot of hate about being a faker. When I come in contact with water I break out in nasty hives (pictures can be found on my Instagram @chronically.linds). I am allergic to my tears, sweat, rain and general water. Reactions can be swollen tongue, lips, sore stomach and regurgitation. This condition is caused by MCAS (mast cell activation syndrome) which is then caused by EDS. MCAS can cause allergic reactions at any point in time whether it is flushing in the face or full anaphylaxis. I wear this necklace for EDS as there’s no where near enough research. I also am wearing it to raise awareness for Aquagenic Urticaria as there is pretty much no known knowledge of this condition. Thank you so much A.W.A.R.E for letting me share my story.” @chronically.linds
21 comments
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