I’ll admit this winter has been hard on me. From the beginning of the new year I have been in a huge pain flare and depressive episode. My motivation was drained. I was constantly exhausted, taking 2 or more naps a day. For a brief moment I lost hope. Hope that I would graduate. Hope that I would ever not be in so much pain. Hope that I would ever leave my mark. I felt unimportant, a burden bringing everyone around me down into the pit I was trapped in. Luckily, I have a great team of doctors, therapists, and specialists. We are adjusting my medication to hopefully bring me out of these flares. As of now, I think it’s helping. But, there is something else I want to focus on in today’s post. And it is very important.
As some of you may know, May is Ehlers-Danlos Syndrome awareness month. This month is about shining a light on this complex, destructive disorder. Since Ehlers-Danlos effects collagen, which can be found in every part of the body, the way it impacts each person, the symptoms they experience, and the severity of those symptoms range drastically. EDS affects each person differently. For some, EDS may be only a slight hinderance in everyday activities. For others it disables them, completely altering their life. Ehlers-Danlos, the co-morbidies it comes with, and the complications that arise because of it can even be fatal. Many Zebras have been lost to this horrible condition and its complications. Unfortunately, there are many medical professionals that are still ignorant to the severity and complexity of Ehlers-Danlos. In fact, many have only heard about EDS in a short chapter in med school. But I have noticed that those well-versed in EDS and its co-morbidies often have a drastically different disposition and bed-side manner. They actually listen to you, take into consideration your opinion. They often are more sympathetic than those that think EDS & Co are just the hysterical rantings of a hypochondriac teenage girl.
When doctors, nurses, and other medical professional take EDS & Co seriously; like the group of complicated, intertwined, crippling conditions they are, patients receive better treatment. When medical professional aren’t understanding, patients are treated like drug seekers. They are denied pain management that allows them to function. They are traumatized by abusive doctors and nurses that don’t understand their pain, leading to Medical C-PTSD. Awareness and education can help prevent these things. Learning about Ehlers-Danlos Syndrome and what often comes with it; Postural Orthostatic Tachycardia Syndrome, Mast Cell Activation Syndrome, Gastroparisis, Chiari Malformation, etc. can help the patients who have been searching for answers for years only to be told time and time again “Its all in your head”.
This month, and every month, I urge you to educate yourself, your friends, family, your doctors and nurses on Ehlers-Danlos Syndrome. As this condition is often misunderstood and misdiagnosed, it is assumed rare. The estimated incidence rate for all types of Ehlers-Danlos is around 1 in 5,000. For Hypermobile Ehlers-Danlos, the most common type of EDS, the incidence rate is around 1 in 15,000. We may be rare but we are NOT invisible. Our stripes are meant to be seen. So the next time you hear hoof beats, don’t think horses. Think Zebras!