What do you have?
EDS.The Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders that can be inherited and are varied both in how they affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. With each is also chronic pain. May is Ehlers Danlos Syndromes Awareness Month.
When were you diagnosed?
I’m speaking about it because I was diagnosed with EDS shortly before I filmed Ink Master Rivals Season 5 in 2014. I was receiving charity care at the time so I was involved in a study so I could get tested without the hospital having to pay for it. The study was looking for a known genetic marker for one of the subtypes of the disorder. I did not have that marker, but I had too many clinical presentations to ignore the diagnosis, on that report, the geneticist told me I had EDS. My cardiologist, on the other hand, put in my chart that I have Marfans Syndrome because I also have clinical presentations of that as well. Each of these disorders both affect the body’s connective tissues. Since I have both written into my charts and I have not had full genetic testing I consider myself hypermobile.
How does it affect you?
There are vast ways that these disorders are present so they are on a spectrum like autism disorders. Generally speaking, the joints of the body go beyond the normal range of motion, they are unstable and can sublux and/or dislocate, the skin is velvety or fragile, bruises easily.. In Marfans you will see long arms, legs and fingers, tall and thin body type, curved spine, chest sinks in or sticks out, flexible joints, flat feet, crowded teeth, stretch marks on the skin that are not related to weight gain or loss.
How do you manage it?
You manage it like you manage your career. You get a good team around you, instead of lawyers and cpas, you get yourself a great medical team; like an informed primary, cardiologist, dentist, eye doctor, physical therapist, etc. You develop routines and patterns and stick to them. Keep records and be self-aware. Educate yourself, implement what you learn from YouTube, Instagram, and Google. Join a local support group and/or one online, and most importantly, keep moving. A hypermobile individual needs to work out their stabilizing muscles every day. I make it an attainable goal by working out for 30 mins each day. Love yourself and keep up your self-care, without your health you have no foundation to build your career or build your life.
How can you find out more about it?
You can find out more about these disorders at: ehlers-danlos.com and marfan.org
Contact information and involvement? Join the #myEDSchallenge and #myHSDchallenge and share your story! You can find me at Radiant Energy Tattoo 11 Princeton Avenue Suite 2 Brick NJ 07720 (732)503-8469, www.MyRadiantEnergy.net www.TattoosByCaroline.com carolineannevans on Instagram @tatugirl and facebook.com/caroline.a.evans