Ehlers-Danlos syndrome (EDS) represents a group of heritable connective tissue disorders, characterized by joint hypermobility, skin extensibility and tissue fragility. Individuals with EDS have a defect in their connective tissue, the tissue which provides support to many body parts such as the skin, muscles and ligaments.
Our lovely Alike user, 58-year-old Ara Schneider has had strange medical issues since she was about two years old. Today, Ara is diagnosed with hEDS (EDS Type III); dysautonomia, MCAS, low gastric motility, reactive airway syndrome, Raynauds, paroxysmal a-fib(vagal-mediated), idiopathic tooth resorption but her path to diagnosis was not a smooth journey, to say the least. She was misdagnosed with conditions such as such as lupus, rheumatoid arthritis, and MS.
Ara was wise enough to research and advocate for her own health in order to reach a proper diagnosis.
"Because of all of my weird medical symptoms I started researching on my own at age 16 in hospital libraries (pre-Internet obviously). I’ve learned how to create medical “handouts “for my physicians and hospitals so I am sure that everybody gets the same exact information and there is no room for error in interpretation of my history, medication, allergies, etc. I also never reference anything from website that don’t have academic research connected to it. I have a very hard time finding doctors that will care for me because of my complexity and age. So, I do a lot of care on my own - I found that continuously complaining to doctors about all the small things that may or may not be connected/treatable/serious gives you a bad reputation in the medical community! I’m doing quite well given all of my issues, the 18 surgeries I’ve had, and the progression of the EDS as I get older."
We caught up with Ara to ask her some questions about her health journey which she was kind enough to share honestly and openly with us - check out her interview here:
Ara's medical reality hasn't stopped her from a respectable background of occupations as a policer officer, EMT, paralagel, associate scientist in biotech, and even a personal trainer! In her spare time she loves growing her succulents and artisan silversmithing. She also recently moved from the east to the west coast where it might be nicer weather for her 4 pet birds! We appreciate the time set aside for this honest interview and hope to see Ara and others with EDS continue to gain a lot of value and impact from the Alike Health app.