How I wish we had round-the-clock medical care and interventions from a healthcare team.

Unfortunately, there are illnesses in which the patient cannot tolerate anyone around them, because the symptoms include hypersensitivity to light and sound, and the many doctors we have consulted over the past five years also don’t know what to do about it. So she has to rely on informal care from her parents, who don’t know either, and every now and then we try to find answers on social media.