May is Ehlers-Danlos Awareness Month which got me thinking about when we were first given the diagnosis and how far we come since that day.
We had made our way through the Bone & Joint Clinic, waving to doctors and nurses who knew us by name, to see a new specialist.
After a quick introduction our new doctor instructed, “Touch you palms flat on the ground without bending your knees.”
He scribbled some notes.
Stiffly he demonstrated how he wanted us to pull our thumb to touch our forearm. He couldn’t do it, but we both could. He pulled his pinky back and asked us to do the same, but our results were totally different than his.
“Just as I suspected,” as he scribbled more notes.
“Extend your arms and your knees….Ummm hmmm….”
He instructed my daughter to climb up on the table where he then tested the flexibility of her hips.
He stepped back and stated, “I’ve reviewed your daughter’s history of injuries and her Beighton Score is a 9 out of a possible 9. She has Ehler’s-Danlos Syndrome.”
Before that moment I had never heard of Ehler’s-Danlos Syndrome. Not even once. I had asked at least a dozen times if something else was possibly wrong that account for how easily my daughter was injured. Getting a diagnosis not only explained a lot, but was also empowering. Myself and my other daughter would later would be officially diagnosed when the same hip injury landed us each in his office again.
The Ehlers-Danlos syndromes and hypermobility spectrum disorders are a group of genetic connective tissue disorders estimated to affect nearly 80 million worldwide. They are generally characterized by joint hypermobility, skin that can be stretched further than normal, and tissue fragility. EDS and HSD can cause debilitating pain and disability and they currently have no cure. However, much can be done for patients if they have can receive an accurate early diagnosis and can gain access to a range of effective management options.
Patients with the Ehlers-Danlos syndromes and related conditions are often called zebras. Medical students have been taught for decades that, “When you hear hoofbeats behind you, think horse, don’t expect a zebra.” In other words, look for the more common and usual, not the surprising, diagnosis. In adopting the zebra as our symbol, we are reminding the medical community, “Sometimes when you hear hoofbeats, it really is a zebra.”
The Ehlers-Danlos syndromes are unexpected because they are rare; they remain misdiagnosed or under-diagnosed, and we hope to improve awareness and understanding of EDS, HSD, and all of their related disorders.
Hemp-Ology Hemp CBD Oil has been life changing for my family of zebras. I went from taking 6-8 OTC anti-inflammatory pills per day, plus the occasion prescription pain reliever during nights of pain-somnia, to having taken only two Advil in the entire year of 2018. Fifty years of injuries and degradation of connective tissues seemed to be catching up to every joint in my body and some organs. It all became manageable in November 2017 when I tested out Hemp CBD Oil and added it to the essential oils I already used.
For people with EDS the cannabinoids in Hemp CBD react with the cannabinoid receptors located throughout the body and brain for pain relief and inflammation reduction. Both topical and internal us of Hemp CBD Oil has been shown to be helpful for those with EDS. Studies have shown that cannabinoids are associated with a reduction in pain levels for EDS, as well as effectiveness for improving function and quality of life [Ware et al.].
We are #FragileButUnbreakable! And I want to help spread #EDSAwareness because knowledge is power.