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    Zachary Pottle

    2 years, 1 month ago · updated 2 years, 1 month ago

    It’s International Rare Disease Day! What rare diseases do you feel need more of a spotlight? I’ve been very surprised to learn about so many ailments and diseases that I’ve never heard about since I started writing for Pain Resource, and would love to hear about more!

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    • Always been a day that I shine 🙂 Ya’ know Alpha-Gal allergy is my answer- because it can affect anyone on this planet Earth, there is no cure and alters every aspect of your daily life- protect yourselves from tick bites! Ehlers-Danlos, Marfans -I’m a zebra! 😉 My birth mother suffered through Morgellons. It was an exhaustive, mystifying ordeal that has still left my sister and I thinking WTF was that!? Some swear it’s mental, some not and the black ‘threads’ as they call them were seen by a family member. The subject has left such a confusing, mystified, somewhat fearful yet believing feeling in my gut. It’s deep, very deep disease. I personally believe it is not mental, due to the fact that my birth mother, had zero internet, no way to find or even hear of the disease when her symptoms began, her daughter saw the black fibers on her and she had actually just eaten pork that as it turns out, wasn’t fully cooked. Seriously, if you have never heard of it-it will flip your lid! The 2 sites we used to try to figure it all out was https://www.morgellons.org/ and https://medicine.okstate.edu/research/morgellons.html

    • I have a family member who has EMF Electromagnetic Sensitivity, MCS Multiple chemical sensitivity and we both have Raynaud’s (she basically poisoned herself working with paints, shellacs, preservatives etc. when she owned her business, until she got so ill. A friends sweet son has Diamond-Blackfan Anemia. Have a kiddo with Expressive-Receptive Language Disorder (MERLD) No shortage of rarity among my friends and family but they make up my tribe and I love them all 😉

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