Family liking life

Making Decisions When Your Child is Newly Diagnosed With a Rare Disease

Reading now: 851
themighty.com

The first couple of days after a diagnosis of a rare disease are a blur. You spend your days and nights in a constant cycle of trying to gain as much information as possible about the disease, grieving, being overly hopeful, letting your mind go down different paths of “what ifs” and maintaining your daily life.

When my son was first diagnosed with Hurler’s syndrome, that cycle did not really allow me to digest or understand fully a lot of the information being thrown at me both through my own research and by other parents of kids with Hurler’s.

I remember one conversation where the parent, who tends to be medically minded, had medications with complicated names rolling off her tongue like the names of famous actors.

Read more on themighty.com
The website mental.guide is an aggregator of articles from open sources. The source is indicated at the beginning and at the end of the announcement. You can send a complaint on the article if you find it unreliable.

Related articles

DMCA