Support

If you or someone you know is battling a pheochromocytoma/paraganglioma, or suspect you may have a pheo/para… you’re not alone.

If you are on Facebook and would like to have somewhere to go and get information, share information, and overall just be able to talk pheo/para lingo with a bunch of friendly strangers all over the world…

Ta-da!

There’s a group for that 🙂

https://www.facebook.com/groups/pheoparasupportgroup/

Strength in numbers!

For even MORE resources & information about pheochromocytoma/paraganglioma, here are some of my favorite resources to recommend:

My friends at the pheo/para troopers do an incredible job categorizing everything for us a-z, all the information you might want to know is on there – all about pheos & paras! They’re awesome and I wish I had this resource sooner! Well, here you go friends!

http://www.pheoparatroopers.org

The carcinoid foundation in my opinion is one of the best places to follow, they have a  constantly changing newsfeed updating us on what’s to come in the neuroendocrine/carcinoid world of cancer! You can really never have too much information when you are becoming your own advocate and involved in your health. They are not pheochromocytoma specific, they are generalized to all carcinoid and neuroendocrine cancers and have many resources available for patients and caregivers. These should be in your favorites folder!

A special shoutout to the Carcinoid Cancer Foundation’s (Find A Doctor) page, features my very own pheo specialist/endocrinologist ‘super Doctor’ I frequently mention! 😄 Also my incredible surgeon who did my amazing second surgery.

It’s a great resource, there are many other features available on their website, check it out!

http://www.carcinoid.org

You can read more about my amazing doctors here:

https://muhc.ca/our-stories/article/fabulous-despite-the-odds

When I was first diagnosed at nineteen years old with pheochromocytoma, I was incredibly lucky to have support from my family, my now husband, and my closest friends. It would have been really great had we known there was people who could have given us a little guidance in situations where we had NO idea what we were dealing with!


It was when I was diagnosed with an aggressive malignant pheochromocytoma this past year that had metastasized that I knew I would need a little more help, that’s where the pheo/para support group came in. The friends and information I have received from joining that group… I will never be able to express my full gratitude, we truly do keep each other going, and navigate each other through this confusing world of ‘rare’

One thought on “Support

  1. You are fabulous! Thank you for being so transparent in sharing your story via your blog. I, too, have a Pheochromocytoma history which I shared in my new book, “It’s All in Your Head! The Gene That Stumped The Doctors” by: Kittye Sharron. It’s available through amazon if you care to view or to order it. I am new to the blogging world, but would be honored to have you “follow my books” at my website. I also follow the Pheochromocytoma Paraganglioma website about which you write. We have much in common. Lord bless your home. Author, Kittye Sharron (aka: Amy Kayleen)

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