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Lois & Ehlers-Danlos Syndrome (EDS)

  January 10, 2017   

I was diagnosed with Ehlers-Danlos Syndrome (EDS) at age 16, unaware of how much my condition would deteriorate over the next few years, and later diagnosed with Postural Orthostatic Tachycardia Syndrome. Almost as soon as I started university the extra and worsening symptoms began, and I found myself having to immediately deal with the results independently. I had to improve my organisation to fit in medical appointments between university work, as well as ensuring I took rests and made sure I did not over-exert myself, whilst also trying to have some sort of social life. I have also been trialling new medications whilst trying to get on with everyday life, which has not always been easy and sometimes a bit scary. I also have bilateral cataracts which has presented other difficulties.

These conditions are my 'plus' because I am more resilient and determined to succeed, to prove that my conditions will not hold me back and that my mental capacity is not affected by them. There was one point where my hip became so painful I was unable to walk, and my parents started looking into getting me a mobility scooter. At that point I decided that I had to fight my hardest to stop that from happening. Now, after hours of physiotherapy and a few wonderful new medications, I am able to walk about fairly normally, usually without a walking stick, and very occasionally run for the train! - Lois Child

These stories are tagged with: faces faces Ehlers-Danlos Syndrome (EDS) Ehlers-Danlos Syndrome (EDS) cataracts cataracts