#zebrastrong

zebrapotsie:

zebrapotsie:

May is Ehler’s Danlos Awareness Month.

”No other disease in the history of modern medicine, has been neglected in such a way as Ehler’s Danlos Syndrome” 
Professor Rodney Grahame

EDS is a group of connective tissue disorders, our collagen is defective. Collagen is a major component of the human body. This causes a wide variety of multi-systematic symptoms. EDS is incredibly hard to diagnosis and not widely known. It is extremely hard to for doctors who are not educated in EDS to put together symptoms like constant nausea, dislocations/subluxations, hyper-mobility and easy bruising (just to name a few). Because of this, EDS is considered a rare and under-diagnosed. We are not rare, just rarely know.

Ehler’s Danlos Syndrome as all to often been overlooked, misunderstood and mistreated. As with many other rare and invisible illnesses. Here are some facts about EDS:

EDS is a connective tissue disorder.

It is something that effects the entire body, it does not just make you extra bendy.

There are 13 identified subtypes, with some being ultra rare.

It is an invisible illness.

It is a life changer.

Not just a ‘minor inconvenience’.

It is valid.

Don’t let anyone tell you differently.

“It’s like when you run a marathon, and you’re sore for the next couple days, but that feeling never. Goes. Away. You rest, it still hurts. You work out more, it still hurts. You take pain medicine, it still hurts. You change your diet, it still hurts. You do every possible thing you can think of, it still hurts. But then you have to pretend like you’re fine otherwise you get ridiculed which just makes everything worse.”

It’s EDS awareness month once again and the reality is awareness is not enough.

For those that don’t know EDS is a connective disorder that causes a wide array of symptoms from joint dislocations to chronic nausea and so much more. There are 13 identified subtypes, all but one having an identified gene and some being ultra rare.

EDS has been overlooked, mistreated and misunderstood for far too long. Patients seeking care and understanding are often met with disbelief from the very people who are supposed to be helping us. We as patients with EDS are denied our own experience by our healthcare providers, the very people who are supposed to help us. There are not only chronic health issues when met with a lack of understanding but also psychological implications. According to Loreen Myerson, an anthropologist and a person living with EDS - “The healthcare experience of anyone with EDS appears to be much the same. Almost without exception, negative.”

Up until 1980 Hysteria was a studied psychological disorder that was thought to be caused by female reproductive organs. Women’s pain is all too often dismissed and ignored, a recent study published in a Pennsylvania journal found that women typically wait 16 minutes longer to receive pain medications than their male counterparts in an emergency room setting. A survey of 2,400 women with chronic pain published in the National Pain Report found that 90% of women feel that their healthcare system discriminates against women. Another study found that women who are in the emergency room with acute abdominal pain wait on average 65 minutes before receiving analgesic (painkiller), while their male counterparts receive analgesic wait on average 49 minutes.

I look back at my childhood and all the signs were there, they were just simply dismissed and ignored by the people who were supposed to be helping me. look back at my childhood and all the signs are there. Women are disproportionately affected by EDS. EDS is still overlooked, misdiagnosed and mistreated by the very people who are supposed to be helping us. My story however is not unique, both anecdotal evidence and peer reviewed research are pointing at disturbing trend that it is not at all new, women are more likely to be dismissed and overlooked when it comes to chronic pain and other health issues. In a peer reviewed study published in the Autoimmunity Reviews found that autoimmune diseases disproportionately affect women with 65% of patients being women. 85% of thyroiditis, systemic sclerosis, systemic lupus erythematosus and sjogren’s patients are female.

This is a cultural issue that we must continue to fight for ourselves and those to come, as demonstrated above both my peer reviewed research and personal narrative. These issues are ever present in our society and women’s pain is taken less seriously whether it comes to emergency care or by a primary care physician.

EDS is misunderstood, overlooked and mistreated. But there is so much hope for the future. All of us zebras who are fighting for more awareness. Hopefully in the future it won’t take us on average 20 years to be diagnosed.

Technically, it was 3 years for me… but I was already just into my forties and it took a serious cascade of symptoms to get the diagnosis ball rolling. Looking back, there were clues right back to my childhood so really, it took four whole decades.