Not only am I late on my blog about Ehlers-Danlose Awareness Month, but I'm also late in blogging in general. I have a lot to update on, but have been struggling to find the energy & brain focus in order to do so. Family & work always win the list of priorities- and while I so wish it were in that order, it really goes work and then family. My hope is that is only the case for now.
ON to EDS Month!
As May is Ehlers-Danlos Syndrome Awareness Month, I am stepping waaaaaay out of my comfort zone and sharing about EDS & how it effects me on my personal Facebook page. It took going through what I've gone through in the last year to finally just come out and tell my friends and family that not only do I have this rare genetic syndrome, but that it effects my life daily, hourly, minute by minute. This is very scary for me. These are my first couple of Facebook posts:
Posted May 1, 2012
May is Ehlers Danlos Syndrome (EDS) Awareness month. While it is not an official Awareness campaign in most states, my hope is that it will become official soon- we desperately need awareness & education among the public & our medical professionals. I will be posting information on EDS & how it effects our family this month. I don't mind talking about it nor do I mind answer questions, in fact, I appreciate when a friend or a loved one takes an interest in finding out about this syndrome that effects our every day. :)
After I posted the above information, my Stepmother shared it on her Facebook page saying the following: "My beautiful daughter and granddaughter suffer from this genetic disorder. Thanks for reading this and educating yourself!"
Posted May 5, 2012
What's Black & White & eats like a horse?
A Zebra of course!
A 'zebra' in medicine is refers to an unlikely diagnostic possibility- stemming from an old saying in teaching medical students; "When you hear hoof beats, think of horses, not zebras." Dr's will rule out the most common of illnesses first, which of course seems logical, and a real bummer when it takes years for someone to be finally diagnosed correctly- in our case with Ehlers Danlos Syndrome (EDS). EDS is considered a "Zebra Illness" which is why the zebra stripes are often seen in EDS awareness images. (Daughter, age 9) was 4 when she was diagnosed with EDS, (Son, age 7) will be 8 (we are waiting for our genetics appt. to officially diagnose him even though his Pediatrician and we are sure he has it) and I was 27 years old.
In our cases, EDS symptoms have been mistaken for the following:
Rheumatoid Arthritis, Lupus, Fibromyalgia, Depression (my favorite), Cystic Fibrosis (with GI emphasis), Benign Congenital Hypotonia, Metabolic Disease, cancer, and more... Living with a Zebra Illness means that most specialists don't know much, if anything about it, nor do they know what to expect, or how to treat the unexpected- resulting in longer hospital stays, and waiting longer for correct treatment than we should- causing more harm in some cases. THIS is why we need more awareness, funding & education about Ehlers Danlos Syndrome. The majority of Dr's we see would rather treat patients with more well known illness, and in some cases they treat us for illnesses that we don't have- hoping it will work anyway (resulting in longer hospital stays & waiting longer for correct treatment- which causes us harm). I don't say this to villianize Dr's- I believe this treatment is a result of the state of our US Healthcare system. We have fought long & hard & found a few FANTASTIC Dr's that want to help us first and study us second. We have been blessed to find a great pediatrician in our area (our pediatrician in CA was awesome too- We ♥ Dr. M!), neurologist, GP (for me) & geneticist. We are continuing to find the rest of the pieces we need to complete our medical team. It has been exciting for me to meet several Residents in the last year who are excited to meet their first EDS patient (me!), this gives me hope that the future of medicine will mean more options for those effected by Zebra Illnesses- including Ehlers Danlos Syndrome. ♥ :) ♥