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My Migraine Story

In my 30's I developed serious headaches. My Dr at the time gave me a prescription for Imitrex, but I found it didn't work. So I was recommended to go...

Invisible Disabilities Awareness Week

▪️In the U.S., Invisible Disabilities Awareness Week is October 20th – 26th, 2024. ▪️I live with Fibromyalgia, Ankylosing Spondylitis, Arthritis, Migraine Disorder, Degenerative Disc Disease, Irritable Bowel Syndrome, Anxiety, Ehlers...

Change of Friends

Have you found that your work in advocacy has changed the dynamics of your friend circle? How accurate is the saying that quality vs quantity of friendships is key, especially...

I didn't even know how to pronounce Sarcoidosis

I'm 48 years old I was diagnosed with a rare disease called Sarcoidosis in 2010. I told my dr u have what I knew nothing about it it can attack...

Do You Deal With Imposter Syndrome? Let's talk!

Hello everyone. There was recently a topic posted by Admin about dealing with Imposter Syndrome. It hit home. It's not something I freely talk about with others in real life...

Busting the Myths: What Patient Advocacy Really Means

A common misconception surrounding patient advocacy and patient - centered care is that it solely involves speaking on behalf of patients who may feel powerless or unable to voice their...

Coping with a New Diagnosis and Managing Side Effects

Here's a structure to guide the discussion: Introductory Post: "I was recently diagnosed with [OCD]. I'm still learning about the condition, and I'm feeling overwhelmed by the side effects of...

Advocacy Cliques

This may be a touchy subject but here it goes. Have you ever experiences advocacy cliques during your advocacy of your specific chronic illness? You know the ones that only...

Misconceptions

What are some common misconceptions people have about patient advocacy?...

What are you favorite conferences to attend?

Share any conferences that you love going to--whether they're about advocacy, your specific condition, or something else!...

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