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fair for rare: jessica's story

My name is Jessica. I was diagnosed at 8-years-old with a rare disease called Ehlers-Danlos syndrome type 6 or Kyphoscoliotic Ehlers-Danlos Syndrome (KEDS).


My rare disease causes me to have weak muscle tone, faulty collagen, dislocations all over my body, subluxations and more. I have currently been diagnosed with 46 medical conditions. I’ve listed a few here: gastroparesis in both the stomach and bowel (I have a feeding tube), instability of the skull, congenital hearing loss, dysphagia, dislocation in all joints, a heart murmur and not seeing properly due to warping of the connective tissue. These are only some of the things I’ve been diagnosed with and are only a small portion of what I struggle with each day.


I’m also autistic and moderately intellectually disabled. In Australia, the doctors don’t know about my rare disease. I feel like they don’t want to learn about it, or so it seems anyway. The doctors tend not to believe what you say to them. It seems they don’t want to believe you, nor do they want to believe in EDS. What would make my life, and others living with EDS’ lives easier, would be if doctors would actually listen, believe and be willing to learn about EDS. There is nothing more frustrating than doctors not listening or believing what you say - doctors also need to listen to doctors in America who specialise in EDS.


My hope is that in the near future, doctors here in Australia will learn to listen and understand. Thank you for reading my story.