Since rare diseases are inherently uncommon, researchers have few opportunities to learn about them. As Marcela De Vivo explained earlier this month on the National Organization for Rare Disorders (NORD) blog, this can make it hard for people with such disorders to get the care the need.
In her post, Vivo describes the challenges she faced as a mother of a child with a rare disease. But the bulk of her story is crafted to help other parents in similar situations. Think of it as a frank, how-to guide that details the practical ways that parents can overcome the challenges of caring for a child with an uncommon medical condition.
Among the actions she recommends in her post:
- Become a part of an online community (such as NORD), where you can get information on your child’s disease.
- Be relentless when trying possible treatments for your child's condition - if the first (or second or third) treatment is unsuccessful, keep trying.
- Share what you learn about the treatments your child tries with other parents and with your doctors.
Even if you don’t have a child, this post is an enlightening and helpful read.
Holly MacCormick is a writing intern in the medical school’s Office of Communication & Public Affairs. She is a graduate student in ecology and evolutionary biology at University of California-Santa Cruz.
Previously: The day my doctor thanked me, Lessons from five million patient and caregiver posts, When do you tell a potential partner about your rare illness?, When you say nothing at all: Living with an invisible illness and New search engine designed to help physicians and the public in diagnosing rare diseases
Photo by stephanski