The importance of collaboration between doctors and patients with rare diseases.
From the post shared on the Facebook page “Malattie Rare Empoli” (link), courtesy of Dr. Marco Macucci, Neurologist at the Centro Malattie Rare Empoli, Author of the translation below, taken from the original article in English “13 Things ER Staff Should Know About People With Rare Diseases ”direct link to the original article.
13 THINGS TO KNOW WHEN A RARE DISEASE PATIENT ARRIVES FOR FIRST AID
For many people with rare disease, the ER is a “necessary evil”. Sometimes you just have to go, but it’s rarely a smooth and uneventful process. Part of the stress of going to the ER when you have a rare disease is that the staff don’t always seem to know how to treat you, in both senses of the word.
They may not have heard of your illness or treated anyone with it before, and they may not really know how to help you. And they may not even understand the level of compassion and patience they need to put in to you.
In the European Union, as many as 30 million people have a rare disease.
Doctors and nurses should expect to meet rare disease patients throughout their careers, and when that happens they need to know how to make these patients feel supported and cared for.
If you are reading this article because you work in a hospital, hopefully, this list will help you understand how to work with rare patients in the future.
These 13 guidelines will help you do just that.1. Accept that rare disease patients know more about the disease than you do. You may have met (perhaps) one or two people with a particular rare disease before … while the person with the disease has to live with it all day every day.
It may not be common for a patient to know more about a disease than you do, but in the case of rare diseases, that’s just a fact. You can be of great help by accepting that your patient is more informed than you and trusting what they tell you about their health needs (along with your medical judgment).
A patient’s story
“I have more than one rare disease and I honestly know more than my specialists, which means I probably know more than you, ER doctor. Also don’t be offended when I ask you what you know about my rare disease. I have to defend myself because too many of you nearly killed me because you refused to listen to me. ”
A second patient: “Please don’t assume you know more than me or my specialist. Unfortunately, we become experts in knowing when our disease is doing something strange. And most likely we called our specialist who advised us to go to the emergency room. ”
A third patient: “If we are armed with information, we are not hypochondriacs. We need to bring the information to keep us safe. We’re not trying to pretend we know more than you do. We just know that we have a rare condition that most people, even doctors, don’t know much about. We are trying to ensure that you and your staff understand the condition and protect ourselves too! “