Spinal tuberculosis — also called Pott's disease — is one of the most serious forms of extrapulmonary TB. It can take months or even years to diagnose, and when it finally is, you are handed a long antibiotic regimen and often very little else.

Living with Morquio syndrome — or caring for someone who has it — places you in a position that most clinicians encounter only rarely, if ever. The diagnosis often comes slowly, the specialists are few, and the gap between what standard medical care offers and what daily life actually requires can be enormous.

Living with pseudoachondroplasia, or raising a child who has been diagnosed with it, carries a particular kind of ambiguity. The diagnosis is confirmed, the genetic report is sitting in a folder, and the appointments are scheduled — but the picture of what is actually happening at the cellular level, and what can be meaningfully tracked or influenced, often stays frustratingly blurry.