IMPORTANT INFORMATION FOR THOSE WITH A RARE OR CHRONIC DISEASE

I Am Not Sick Boy

I came across this article on CrowdMed today.  It is written by Jean Jahoor and she meant for it to help people who are newly diagnosed with a rare disease.  She did a great job and lays out instructions in an easy-to-understand  and in a well-organized manner.  If you put the words, ‘your child’ wherever it says, ‘you’, this would be a wonderful instructional guide for when you are told that your child has a rare disease.  Not only a rare disease.  It would be helpful for any parent with a child with a chronic illness.  It is not uncommon for to be given the wrong diagnosis at first in either case.  For a child with a chronic disorder, it takes an average of eight years to finally receive a correct diagnosis.  I think that if we used this information, it could possibly help us and our children to have…

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

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