My Go-to Resources for Information and Support

My Go-to Resources for Information and Support

 

Hey everyone!

This week, I want to get onto the topic of online support pages and medical resources for Cushing’s. A lot of people turn to support pages for full-on medical advice — and let’s be real here, only a medical professional can give out proper medical advice. What we non-medical professionals can do is share our stories hoping that they spark inspiration and strength for others to go out into the medical world and seek help from their doctors.

Now, don’t get me wrong. Support resources, such as social media pages and blogs, can sometimes be helpful when it comes to some medical details, because some general practitioners are unfamiliar with Cushing’s, an “uncommon” disease.

Support page owners have gone through many tests, trials, and downfalls. They understand your point of view from their own experiences. Even Cushing’s experts (unless they have gone through it), can never fully grasp how it feels.

However, we can’t always go by the information we read on a support page. I know this sounds contradictory, but most of us didn’t go to school to learn how to interpret medical tests, results, lab measurements, etc. Cushing’s is such a complex disease. I was what they call “textbook” Cushing’s. My presentation and symptoms were exactly the way medical students learn how to recognize the disease, unless they choose to go beyond general practitioner training and specialize in one area. However, some patients have different presentations of the disease.

I have compiled a shortlist of medical pages and support pages that can help you to understand Cushing’s better and to feel less alone with the disease.

  1. Cushing’s Disease News: The perfect mix of support and medical studies. It’s a great site to find both medical information and patient perspectives.
  2. Crush Cushing’s: My Facebook support page. There are hundreds of patients and caregivers on here. It’s a great place to shares stories and interact with others.
  3. Mayo Clinic: The Mayo Clinic is a fantastic medical source. It’s reputable and accurate. A lot of American patients go through the Mayo Clinic to get a diagnosis.
  4. Cushing’s Support & Research Foundation: This was one of the first websites I found when I was newly diagnosed. If you sign up, you get a seasonal booklet in the mail with updated findings on Cushing’s and patient stories.

These are my top four sites I go to when I’m looking for information or support. If you have a page (or a few) you’d like to share, leave them in the comments below! Share the knowledge!

Until next week,

XOXO, Catarina

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Note: Cushing’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cushing’s Disease News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Crushing’s.

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