What is EDS?
My name is Jenna and I have a genetic condition called hypermobile Ehlers Danlos Syndrome (EDS). EDS is a somewhat rare connective tissue disorder where the tissue is too all around too lax. Classic symptoms include joint hypermobility, frequent dislocations, easy bruising, abnormal scarring, and velvety skin. In my case, I have dislocated both of my jaws more times than I can count, as well as most of the joints in my hands. I also have issues with the joint that holds my head up, which is known as craniocervical instability. I am currently in the process of figuring out treatment for this, but for the time being I have a wonderful collection of neck braces. EDS is a multi-system disorder, which means that it affects multiple systems in my body (since connective tissue is everywhere). In terms of digestion, because my tissue is so weak, food moves rather slowly throughout my digestive tract. This lovely can of worms is called gastric dysmotility— I’ll spare you the details of what that entails.
The Effects
The fun thing about EDS is that it seldom comes alone. If you’re really lucky, like me, you get a lovely trifecta of disorders. That means that you have Ehlers-Danlos along with two other disorders called Postural Orthostatic Tachycardia Syndrome (POTS) and Mast Cell Activation Syndrome (MCAS). POTS is an autonomous nervous system disorder that entails lightheadedness, venous pooling, and fainting when standing up. MCAS is an immunological condition where your mast cells, or allergy cells, are super paranoid and think you’re allergic to everything. In other words, unless I take a cocktail of antihistamines, I get flushing, hives and gastrointestinal symptoms from anything and everything. Day to day, I try to follow a diet where I avoid foods that are high in histamine, as well as foods that interfere with gastric motility as mentioned previously.
My Experience with EDS
I got diagnosed with this stuff only few years ago, as it is incredibly difficult to diagnose. I take a large bag of daily medications, have frequent doctor’s visits, and am trying really hard to manage. I barely managed throughout undergrad, and it’s even harder now in grad school. I am currently a full-time speech-language pathology student at The George Washington University and am about halfway through my master’s degree.
My entire first year of grad school I spent battling an unexpected, massive flareup. I was passing out more often, I couldn’t walk much, my digestion worsened drastically, my dislocations became more frequent, and my overall pain became depressing. I more than anything wanted to connect with my peers, explore DC, and feel like a normal 22-year-old, but felt far from that. I was missing class all the of the time, having trouble completing assignments, and was all around incredibly anxious.
After a few months of chaos, I ended up registering with the office of disability services, was brutally honest with all of my professors, and gave myself a breather. I lucked out because the faculty in the speech and hearing department at GW have been magnificent. My advisor checks in with me constantly, and even worked out an extended graduation program for me so that my course load isn’t as heavy.
Chronic Illness as a Future Medical Profesional
I used to look down upon myself in terms of my health. I was frustrated with the cards I was dealt, and I had almost given up pursuing the education and career that I wanted. However, in the world of speech-language pathology, I have learned to make my chronic illness my strength. I have been the patient so many times that I think it gives me a special edge as a medical professional. I understand having to go from doctor to therapist, I understand being frustrated with slow progress, and I understand feeling isolated because of your condition. I can use that to be a stronger speech-language pathologist, and that is what is keeping me going.
