Ehlers-Danlos Syndrome

‘He said I was a hypochondriac and was faking. ’You must be enjoying the attention.’ I became extremely nauseous, dizzy, shaky, and felt like I was going to pass out.’: Woman with bulimia, POTS, MCAS, EDS struggles for symptoms to be believed

“I don’t remember losing consciousness. Everything happened so fast, the next thing I can clearly remember is lying flat. I was sitting there, in a wheelchair, and he said I was a hypochondriac and was faking. I left his office in tears.”

‘This surgery is unlike the other 35. Do you understand we don’t know the effects?’ With a shaky hand, I signed my name on the black line.’: Woman with Ehlers-Danlos Syndrome undergoes life-altering surgery

“‘I’m ‘chickening out. I can’t do it.’ My dad was holding the door open when I took ONE step and froze. Something shifted in my back like it never had. I had some ‘colorful language’ and said, ‘Let’s go.’ Tears in my eyes, I signed my name on the black line. 8 hours later, I woke up screaming. ‘I can’t do this! Ow! The pain! Ow! PUT ME IN A COMA! I CAN’T DO THIS!’ The meds weren’t working. My mom was rushed in.”

‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’

“When you see me in a handicapped parking spot, you might glare. You may even be like those who have said something rude or left a nasty note on my windshield. I sport titanium rods and screws that go from the base of my head to my mid-back. You wouldn’t know by looking at me I have a terminal illness.”

‘It’s just anxiety. It’s all in your head.’ I was on the floor, barely conscious. Something wasn’t right, and Ruby knew it.’: Woman diagnosed with POTS, genetic mutation with help from psychiatric service dog

“My dog Ruby was acting extremely odd towards me. I didn’t think anything of it. Then, paramedics arrived. By then, I was barely conscious, being rushed to the ER. I didn’t expect it: ‘The tests came back. It is life threatening and life expectancy is 38 years old.’ That hit me hard. I gave the doctor a nod and a quiet, ‘Okay.’ I was speechless. I didn’t know how to break the news to my fiancé.”

‘What’s that? It could be something sinister. You might have a tumor.’ I got fired for being ill.’: Young woman diagnosed with Ehlers Danlos Syndrome after countless tests, ‘I was getting sicker and sicker, but with no answers’

“I was sobbing in bed one night angry at God. ‘Why won’t you take the pain away?!’ I had worked so hard despite being unwell, pushing myself to achieve. I got the grades to study music, my true passion, but was too unwell to go! I was gutted. The emergency doctor uttered the word ‘stroke.’ I was in disbelief. I was only 19 years old.”

‘My left shoulder dislocated talking to my mom. She was mortified. ‘AHAA!,’ he said.’: Young woman recalls ‘party tricks’ as joints dislocate after Ehlers-Danlos Syndrome diagnosis

“I woke up with a sore knee. We ignored it… until the pain became unbearable and was spreading. It all happened so fast. I was too overwhelmed to be scared. However, I was confused. We all were. The tricks I used to gross my friends out ended up being a piece of the puzzle. Hyper mobility, one of the most obvious symptoms of EDS.”

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