Of course, there was a media storm. Much like the time when Jameela Jamil acknowledged having Ehlers Danlos Syndrome and another autoimmune disease. But there was also a lot of confusion, and outcry.
Ehlers-Danlos syndrome itself may be a condition founded on connective-tissue laxity. However, it is untrue to then imply that every other condition that often accompanies EDS is an “and” and not a consequence. I believe that it is this chronic lack of understanding about the impact and the extended consequence of connective tissue laxity that allows so many people in this “community“ to be underserved.
Ehlers Danlos IS a connective tissue disorder. But in rendering this as a condition which ONLY affects skin extensibility or joint laxity is to miss the whole point. Connective tissue is EVERYWHERE. Collagen is everywhere. Through its fundamental role in forming a foundational part of the extracellular matrix, collagen and nerves will be intimately and forever connected. Having EDS affects collagen so it WILL affect your nervous system. Whether that is deemed a ‘neurological issue’ or not is, as with everything in EDS, a question of severity. But having connective tissue laxity can’t not impact your nervous system – and many other systems in the body besides. EDS CANNOT be pushed into a ‘rheumatology’ box. Any attempt to do so is what leaves patients alone, frightened, lost and feeling misunderstood.