May is Ehlers-Danlos Syndrome Awareness Month! Help me raise money for the Ehlers-Danlos Society

What is Ehlers-Danlos Syndrome?

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders caused by a failure to properly process collagen. Since connective tissue is found everywhere in the body, EDS has widespread and chronic symptoms which affect every major system in the body.

I have the subtype of Hypermobile EDS, which is characterized by joint hypermobility, joint dislocation, widespread and progressively worsening musculoskeletal pain, migraine, chronic fatigue, dysautonomia, anxiety and depression, among other symptoms.

There is no cure for EDS, and treatment is primarily focused on symptom management and prevention of progressive joint damage.

My Diagnosis Journey

Growing up, I never experienced anything abnormal regarding my health. Sure, I've always had long arms, skinny fingers, pale skin dotted with bruises, and double-jointed elbows, but I never thought anything of it. I lived a carefree and painless life until I graduated college. Then out of nowhere, I started to have a deep ache in my hip and lower back, and no amount of Tylenol or ice would help. Once the pain became overwhelming, I saw my first specialist, which began the arduous, four-year process of finding a diagnosis.

I saw doctor after doctor, did test after test, scan after scan, to only discover more questions rather than answers: a rare hormone condition, an artery blocking my kidney since birth, a ligament wrapped around a blood vessel in my abdomen, bone spurs in both of my hips. To doctors, these discoveries appeared to be a terrible case of bad luck. But I knew something bigger was going on, yet no doctor seemed to listen or care.

In 2018, I first heard of Ehlers-Danlos Syndrome after my physical therapist observed how far my knees hyperextend when walking. With this new possibility, I went to my rheumatologist, who then called in a personal favor with his retired colleague. His friend was one of the top geneticists in the country for EDS, and he providentially lived in Dallas! This doctor was moved enough by my case to take me on as a patient even though he was retired. By the end of our first appointment, he did what dozens of other specialists had failed to do in the four years prior — he gave me a diagnosis. Receiving the diagnosis of EDS felt like a precious gift. Even though it would be a life-altering illness, at least I had a name for my symptoms and pain.

Life Now

There are many frustrations with EDS. There is no cure for EDS. And there isn't one doctor I see for EDS. It mostly falls on me to seek out specialists for my vast array of symptoms, resulting in a team of 12+ doctors I see on a regular basis. Pain management is never a permanent fix — I can take one medication for a year until it stops working, I can go to physical therapy for one body part until another one starts hurting. My brain and heart don't communicate effectively with each other, creating a low resting heart rate and low blood pressure which makes me constantly lightheaded and prone to fainting. I can't enjoy exercise like I once did because my joints are so unstable — I have to move slowly, with low impact. When I do have the energy for exercise, my body aches for days afterwards. The labral tears in my shoulder and my hip make it difficult to sleep, which is only exacerbated by my sleep apnea. My ears and eyes are sensitive to sound and light, triggering migraines if I'm in the bright sun or in a loud room. Because of the inability to process collagen, my skin has suffered, leaving me with bruises, scars, cellulite, and stretch marks across my frail skin. I want to pick up my daughter and to roll on the floor and play beside her, but my knees ache when I stand, and my joints can’t bear the weight of holding her.

Living with a chronic illness often feels like a lifetime of mourning the expectations I had for myself. Subconsciously, I always thought I could do whatever I wanted whenever I wanted. I dreamed of biking through France, of hiking the Appalachian Trail, of giving my daughter a piggy-back ride. With EDS, those dreams become unlikely if not impossible. I must be okay with accepting physical limitations for my body when I want the whole world at my fingertips. And it's really hard.

I say all of this not for pity but for education and enlightenment. I am one of many with an invisible chronic illness. It is much more common than I realized to have a chronic illness, and we must do our part to educate ourselves, offer support, and foster empathy and inclusion.

Hope + Joy

It’s impossible for me to share about my EDS without also touching on the goodness of the Lord throughout all of this. I never thought I would have the lifelong battle of a chronic illness — no one ever does. It is incredibly easy for me to get into a mindset of bitterness and think that I deserve a better life than this. Yet the Lord has graciously given me a deeper understanding of His presence and an invincible joy beyond my circumstances. He redeems what is broken for His glory and my good. He gives me strength for today and bright hope for tomorrow. He has prepared a feast for me in the desert, and I’d love to share it with you too.

Thank you

A special thank you goes out to all the people on my support team: my wonderful family, my amazing friends, my therapists, my doctors. To my selfless husband who never knew me as “healthy” and still makes it his mission to make my life brighter and fuller. And to my sweet Emma boo: you are a miracle to me; I love you so dearly.