My exceptionally kind and hardworking friend Avalon has what is called Ehlers-Danlos Syndrome, a rare disease (specifically, a group of disorders) that affects the connective tissue in the body. This means the skin, bones, blood vessels, and many other organs and tissues can have defects that cause symptoms which range from mild, to life-threatening, including frequent seizures.  While Avalon’s done absolutely amazing at handling the surgeries, treatment, and obstacles thrown at her so far, EDS unfortunately is persistent and I’m asking for your help as a community to make this a bit easier for her, as she deserves it.


Currently, in addition to everything else, she’s on a medication that currently costs her over $1000 a month. She works extremely hard to afford this, and I’d be incredibly grateful to anyone that would be willing to contribute to the fund for it- this would hopefully alleviate some of the stress for her.



More info on EDS:

from the EDS website-
more info on EDS 

from Avalon-
How EDS affects Avalon specifically:

"Hi! My name is Avalon and I have a severe and progressive form of EDS (Ehlers Danlos Syndrome) which results in a defect of collagen production, which affects your joints, blood vessles, and organs such as your brain, heart, eyes, stomach, etc. (Collagen is the glue that holds your body together). So I dislocate and sublux my joints easily just by moving or even sneezing. I rely on oxygen 24/7 because I am unable to maintain my o2 saturations without it. I have AVN (Avascular Necrosis) which is a fancy word for bone death in my hips, knees, and shoulders. It causes joint pain due to the joint spaces disintegrating until they need to be replaced. So far I've had 1 hip replacement and 4 decompression surgeries. At some point I will need the other hip and both shoulders replaced. I have ITP (Idiopathic Thrombocytopenia Purpura) which means my antibodies attack my good cells instead of invaders, and it causes me to lose platelets. This causes internal bleeding and the inability to clot, forcing me to get platelet infusions at the hospital. I have POTS (Postural Orthostatic Tachycardia Syndome) which means my heart and blood pressure don't work together. So when I stand up or change position, instead of my blood pressure correcting for that change, it drops really low and my heart rate shoots up to compensate, and I pass out. I have arrhythmias like atrial tachycardia and P wave morphology that gets triggered by strong emotions, anxiety, and getting worked up in general. I average about 16 episodes of atrial tachycardia a day according to my implanted loop recorder. I have frequent seizures which complicates life tremendously. I also have a SCI (Spinal Cord Injury). I rely on a wheelchair for outings because my joints dislocate and I often pass out from hypoxia or heart rate/blood pressure complications from exerting myself. EDS affects just about every part of my body and every aspect of day to day life. But despite having incredible challenges, my life is endlessly beautiful because of the people I have in it. And for me, that's more than I could ever ask for. "

EDS is a rare disease that many people don’t know about, so if you are not in the position to responsibly donate at this time, please consider sharing info about EDS for awareness. Thank you to everyone who took the time to read & share.