Are You a Zebra?
I was born with a genetic connective tissue disorder called Ehlers Danlos Syndrome, or EDS. for short Unfortunately, most Drs don't know about EDS because it is considered a 'rare' disorder. How rare the disorder actually is, is hotly disputed. The Drs told me, time & time again, that the chances of me having a connective tissue disorder are slim to none.
By the time I strongly suspected I had one, I had fought for 3 years to get my diagnosis. By the time I was diagnosed, I was 36 years old.
The Rhuematologist simply looked at me, shook his head, and then said, "You have EDS, but it's too late for you. All the damage has been been done."
The Drs missed my EDS for 36 YEARS! This is actually not uncommon, for CTDs to go undiagnosed, and misdiagnosed for that long. That's why these memes are important for you to read, even if you feel like you are 'normal' or 'healthy.'
I am 37 years old, and have 11 herniated discs in my back. Ehlers Danlos, the syndrome they said I couldn't possibly have had, has taken 48% of my spine. As a further complication of EDS, for the last 3 years, I've been confined to my bed, 22 hours of every day.
For a disorder that I've had since birth, and that the Drs told me I couldn't possibly have, EDS sure has taken a lot from me.
So that's why, I'm so passionate about informing so called 'normal' people, about Ehlers Danlos & other connective tissue disorders such as Marfan Syndrome. These disorders can KILL and must be monitored. No matter how much damage has been done by a connective tissue disorder (CTD), it is NEVER too late for diagnosis, bracing, & lifestyle adjustments.
Early diagnosis saves lives! Why? Because CTDs such as EDS, can affect the heart & aorta.
The most dangerous complication of CTDs are when they affect the aorta, manifesting an aortic aneurysm. Aortic Aneurysms can kill within minutes. And even if they are diagnosed within minutes, many do not survive the surgery. So as you can see, it's very important to know whether you have a CTD or not.
If you KNOW about your CTD, you can make lifestyle changes such as NO lifting, no contact sports, bracing of joints to prevent injury, and the all-important cardiac & aortic yearly monitoring.
You see, if my Drs had diagnosed my CTD when I was 16 [and came down with a related disorder, Postural Orthstatic Tachycardia Syndrome (POTS)], I could have amended my lifestyle by limiting heavy lifting and not taking jobs that required lifting. I literally worked moving furniture at one point!!
If Drs had not missed my diagnosis, it's possible that at the young age of 31, I wouldn't have been disabled. And I don't want that to happen to anyone else.
So I'm passionate about raising awareness of CTDs to make sure that no one else has to go through what I've been through. A little tiny bit of education, such as this cute little meme I made today can save your life! Have you been diagnosed with any of the conditions on this list, or have any of the characteristics like long fingers & toes?
I have really long toes, (arachnodactly) and that is actually how I found out about my CTD believe it or not! Genetic disorders affect a person's appearance, and certain things about their body. So while you may not be used to thinking about illness in this way, this is how geneticists get their first clues to which disorders a person has.
I could talk forever on this, so I'll spare you that. But before I go, I do want to say, that
you may be living a 100% healthy & normal life right now - and you can still have a CTD like EDS.
I wish I had seen a meme like this one in my twenties because I could've saved myself about 5-7 disc herniations if I had! I considered myself healthy as a horse. And I looked totally normal too (besides my super long ET toes that is!). So take a look at this meme, and pass it around on your social media. You never know whose life you may be saving.
Big big love, Kai
Into New Age spirituality & tired of hearing you 'attracted' your illness? Come join our Facebook group for Woo Woo Spoonies, The Wounded Healer. Can't wait to see you there! xx