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What Google Won't Tell You When You Search for Ehlers-Danlos Syndrome

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When you google Ehlers-Danlos syndrome (EDS), it says “A group of inherited disorders, that mostly affect the skin, joints and blood vessels.”

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Yes. I have soft skin. It bruises easily. It cuts easily. It affects my skin.

Yes, my joints dislocate. My knees, ankles, hips, shoulders, wrists, fingers, ribs, collarbones, elbows – they are all loose and can be manipulated out of place manually. It affects my joints.

Yes, my blood vessels are abnormal. They break, they bruise, they throw off blood clots. My pulse is lucky to be over 100 bpm and my heart beats abnormally high. It affects my blood vessels.

But Google doesn’t tell you a lot of things…

It doesn’t tell you that your skin is more sensitive than that of a baby’s. The sun touching my skin feels like someone is pouring acid on me. I’m allergic to basically any fragrance, perfume, chemical, body wash, shampoo and conditioner. If it isn’t completely organic and stripped from fragrance and chemicals, I become itchy and get rashes. It doesn’t tell you that your skin is so fragile, everything scars. And those scars produce horrid purple and raised keloid scars — forever.

It doesn’t tell you that with every move you make, you risk a joint dislocating. It doesn’t tell you how you will grow up with sprained ankles, dislocated knees and back pain that a 15-year-old really shouldn’t feel.

It doesn’t warn you that in your 20s, you could be on more pain medication than a doctor thought was possible for someone so young. There’s withdrawals, and the anxiety of becoming addicted is overwhelming. There’s financial strain because it’s expensive. You can develop a dependence on these tablets just to help you get out of bed every day.

It doesn’t tell you that at 21, the blood vessels in your fingers can become so weak, that simply holding a bottle of milk becomes too much. They snap. They sting. They bruise. They swell. They are painful.

It doesn’t tell you about the chronic tiredness you will feel. The type of tiredness that sleep just doesn’t fix. Showering will become too much. Social events will be non-existent. You will be so tired. Physically. Mentally. Emotionally.

It doesn’t tell you about the gastrointestinal issues EDS likes to bring to the party. Enjoying any food for years, until suddenly your body decides anything bigger than a grape can’t be digested. The debilitating nausea. The unrelenting vomiting. It’s more than not eating. It’s a whole rollercoaster of gastrointestinal and digestive issues for which you will struggle to find answers.

It doesn’t warn you of the uncertainty it will create. Wanted to be a nurse? Well, when you faint seven times a day and struggle to walk without a dislocation, a nurse is probably not going to be the ideal career. How about an athlete? You were great in school, remember? Well, after major knee surgeries and ankle reconstructions, all the stress on those joints that produce the wrong tissues will not get you “gold” in a competition. The mental turmoil it creates is often worse than the physical symptoms.

It doesn’t warn you of the children it will rob from you. EDS gives you a 50/50 chance of passing it down to your child. If you were willing to risk it and possibly put your child through this pain, would your body handle it? Would you be able to be the mother you always dreamt of being?

And it certainly doesn’t warn you of how doctors and nurses are undereducated when it comes to EDS.

It doesn’t tell you that ultimately we will have to spend our life fighting for medical professionals to listen to us, take us seriously, and try to help us live the best quality lives possible.

So remember, there’s a world of experiences and pain that Google won’t show you.

Originally published: March 13, 2019
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