The dazzling opinion of a patien
- You can ask me questions. In reality it is better than Google because we are people.
- A second patient:”If you don’t know much (or nothing!) About my illness, have the humility to inform yourself or ask me for more.”
- Many people with rare diseases do everything they can to avoid going to the emergency room. If there are, it must be an emergency.
- People with rare diseases are very used to having health problems and going to doctors and hospitals.
Pssst – it’s not funny! Nobody really wants to go to the hospital, especially when they usually get confused about their illness. Trust that if a rare patient is in your hospital, they have tried everything to manage their health on their own.
A patient’s story:“I have to deal with complications for months before seeking medical help because there are so few medical professionals in my area who know enough to help me or don’t argue with me about treatment options. Often I am not helped and I have to try to drive alone to find a new doctor or a new hospital. ”
A second patient:“Just know that we have done everything possible to avoid another visit to the ER. The moment we take our son with us, we are exhausted to an indescribable level in words ”.Rare patients don’t expect you to know everything, but they do expect you to be kind and helpful.
- A person with a rare disease would always want to meet doctors and nurses who are informed about their disease, but they know it is quite unlikely.
- So you don’t have to be afraid to admit that you don’t know what to do. However, you should always be kind and do whatever you can to help them. Compassion and a willingness to go out of your way to do whatever procedures and tests you can do go a long way.
- One patient:“I understand that we are all human and that we can make mistakes and not know everything. If you’ve done your best and tried to help, that’s all I can ask! “Call the specialist if you need help.
If you meet someone with a rare disease, chances are they have a specialist who you see with regularly, who is much more knowledgeable about their condition than you are. Don’t be afraid to call them and ask for their advice.
A patient’s voice
“It won’t offend me if you call my specialist who knows about my rare disease. You must not hide that you have never seen it before. It is an opportunity to get to know her and help me as a patient. ”
- Although staff members may gather out of curiosity when a rare patient is in the emergency room, be respectful of the patient’s time and his or her family.
- When someone with an illness that no one has ever seen in the hospital comes to the emergency room, it sometimes leads other doctors and nurses to see this “interesting” patient.
- Please be aware that they would probably just want to focus on getting help, not entertaining a crowd of onlookers.
- Give them their space and allow them to be healed.
One patient:Please don’t keep us waiting for hours, having to recite our son’s symptoms and medical history to countless medical students or postgraduates, who seem to come together when an unusual case comes into the ER.”