My Life with Ehlers-Danlos Syndrome, Part 2

Bringing a new perspective to Peer Health, Sabriyah Shahbandy has shared with us her experience with Ehlers-Danlos Syndrome. Her pervious post, My Life with Ehlers-Danlos Syndrome, Part 1, gave some background to herself and the condition. Today, she shares what it truly means to live with Ehlers-Danlos.

Today, I’m 20 years old and EDS pretty much runs my life. People have told me that I can’t let my problems control me like that, but the thing is, EDS is coded into my DNA. It is literally a part of me. I can’t get rid of it—I have to learn to live with it. I’ve had to suck up my pride and admit to myself that I need assistance, which has been difficult as I’ve always been a very independent person. I’ve had to make a lot of sacrifices because of my illness, including foregoing my lifelong dream of becoming a research physicist because I physically couldn’t keep up with the work.

These days, I live at home with my mom. I’m still recovering from a hip surgery that I had about 6 months ago, and I have a lot of trouble walking, so I use a cane most days. Daily, I take anywhere between 14 and 20 pills—that amounts to 7,300 pills per year. I have a doctor for pretty much everything. To date, I have a primary care physician, two orthopedic surgeons, a dermatologist, an allergist, a cardiologist, a neurologist, and a periodontist (because EDS has many oral manifestations).

I’ve also developed many comorbid conditions in recent years—it’s not uncommon for people with EDS to be diagnosed with a long list of conditions, many of which are indirectly related to the collagen defects brought on by the disease itself. In my case, I have developed Fibromyalgia, Chronic Fatigue Syndrome (although I believe this to be a misnomer—every other country in the world calls this disease Myalgic Encephalomyelitis), Chronic Urticaria, Chronic Cold Urticaria, Mast Cell Activation Syndrome, Osteoarthritis, Bilateral Hip Dysplasia, Temporomandibular Joint Dysfunction, Chronic Daily Headaches, and my neurologist is currently running tests to see if I have Idiopathic Intercranial Hypertension, which is increased pressure in the brain.

Living with all of these problems can take a lot out of you, but I haven’t let it take me. I enrolled in a local University and I take classes online and on-campus, and am working towards my degree in International Studies. I try to stay active in my community and online within the EDS community. I have a role in the local chapter of the Daughters of the American Revolution, I have been in collaboration with Peer Health for a few months now, and I’m also working for the National Iranian American Council’s Action Team. Granted, even moderate levels of activity put me in bed for a couple days, but it’s important to me that I keep living. I learned a long time ago that the world doesn’t stop when you do, so I strive to keep going. EDS coexists with me, but it doesn’t own me, and I’m doing everything in my power to keep it that way.

You can follow Sabriyah on Instagram at @sabriyahstar or read her other work on The Mighty.

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