I acknowledge that I am privileged in that I’ve always had good insurance but it can still be a challenge to access the care I need.

Case in point: I was diagnosed with hypermobile Ehlers-Danlos syndrome, an inherited connective tissue disorder, this year. At age 65. That’s a lot of decades of missed diagnoses with many of the manifestions of hEDS written off as idiopathic, stress-induced, hormonal, anxiety-induced, or untreatable. The diagnosis of hEDS, made by a specialized nurse-practitioner, has led to an avalanche of tests and specialists. Next month, I will have brain surgery to treat Chiari malformation, which occurs when the brain tonsils descend into the top of the spinal column, disrupting the flow of cerebrospinal fluid and causing symptoms including brain fog, fatigue, balance problems, tinnitus, and visual blurring. Chiari is rare in adults, except in those with connective tissue disorders. The laxity of our connective tissue allows Chiari to develop.

I am grateful to finally have my hEDS diagnosis. I feel that my body makes sense for the first time when I view it in light of my collagen differences. However, it’s difficult knowing that I would have had more effective treatment over the decades had I been diagnosed in childhood.

In December, there will be new diagnostic criteria for hEDS and the related hypermobility spectrum disorder (HSD), published in a peer-reviewed journal. Next year, there will be a best practices article. There is hope that these articles will reach primary care providers, most of whom have had little education on hEDS/HSD. PCPs are best positioned to diagnosis these disorders as they are trained to look at the whole person, not just a particular body part or system as most specialists are.

We’ll see.

Meanwhile, people with hEDS/HSD will continue networking and supporting each other as we seek knowledgeable providers who are able to treat our complex disorder.