Embracing Uncertainty
Navigating the Unknown’s of a Rare Disease Diagnosis
10 min readFeb 1, 2024
Imagine you’re having a conversation when you notice that your mouth feels heavy, that your lips are slow to respond, and that your tongue gets in the way of forming words. As you sense weakness settling into your jaw, you recognize the tell-tale signs of a flare taking hold. If you don’t sit soon, your neck, shoulders, and back will…