rare disease

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Dear Doctors

Reposted by: @chronically_sick_
•••
I understand that doctors don’t know every answer. I don’t expect them to.

What I DO expect, is to be believed. To be validated, and supported.

This shouldn’t be too much to ask. All I am asking is for you to do your JOB.

This is what you signed up for. You are failing your patients if you are dismissing, or gaslighting them.

If the tests come back normal, do more. Refer them to someone else. If you don’t have the answer, keep referring them to other specialists.

If and when the results come back normal, do not blame it on anxiety. Do not say it is “all in their head.”

Why would we be asking for your help if we didn’t really need it?

Medical trauma is real. You have more of an impact on someone’s future than you can ever imagine.

I wish someone had taken the time to tell me that they believed me. That they were sorry I was going through this.

I wish that I didn’t have to defend myself every single time I see a doctor. I wish that I didn’t have panic attacks before every doctors appointment.

This all could have been avoided if you had just done your job.

Love,

A traumatized patient.

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Chronic Idiopathic Urticaria (Rare Disease)

Urticariaday2020 -Who cares? ucare!
Who cares? UCARE!
Also in 2020, urticaria day (UDAY) remains a day where urticaria patients are the focus of attention. Now in its 6th year, UDAY is the opportunity to raise awareness of urticaria among patients, their families, doctors, politicians, the press and the rest of the world.
So join us on October 1st, 2020 by organizing your own UDAY event! A big focus this year will be on digital UDAY initiatives. Virtual congresses, educational webinars, digital art projects, social media campaigns and urticaria apps are all in the talks among participants, and perhaps we can use this opportunity to reach even further. Is there a better opportunity to set up a regional self-help group? Help make UDAY known to friends, family and other affected persons!
Be creative, and continue spreading the news about UDAY! Don’t forget to post all your events on the official urticaria day 2020 website so that your personal UDAY will be a complete success.
Every contribution counts!
Urticaria day 2020 is supported by the urticaria network e.V. (UNEV), the UCARE network and many organizations worldwide that are committed to improving the lives of patients with urticaria.