The story of Bethany
I am hypermobile. It is suspected that hypermobility is common among the general population, and usually benign or caused by sports (like yoga, dancing, or gymnastics.) My hypermobility is caused by Ehlers Danlos syndrome and is not common and far from benign. Along with severe joint problems that have left me dependent on a wheelchair, I have been hospitalized twice due to complications linked to EDS. I have been diagnosed with Gastroparesis, another fairly well-known condition like hypermobility, but I am of a small percentage of Gastroparesis sufferers who do not respond to medication and for which there is no known treatment. I have also been diagnosed with Postural Orthostatic Tachycardia Syndrome, another complication of my EDS. With POTS, it typically occurs in adolescent females and gets better with age, mine has worsened as I’ve aged. In the future, it is likely I will need multiple surgeries on my joints, many different forms of treatment, multiple hospital stays, feeding tubes, and more. My doctor’s are forever baffled by my rare condition and unique forms of my disorders, unsure how to treat me and therefore afraid to take action, most doctors have either dropped me as a patient or chosen not to do anything to further my treatment unless I get much, much worse. This is a sad fact of living with a rare disease.
Find others with Ehlers-Danlos Syndrome on RareConnect, the online platform for people affected by rare disease