Greetings fellow FLAGC Members! My name is Dani and I am honored to be the official writer for all things EDS.
In case you’re wondering what EDS stands for…it is Ehlers-Danlos Syndrome. EDS is a group of inherited connective tissue disorders, caused by a defect in the synthesis of collagen (a protein in connective tissue). The collagen in connective tissue helps tissues to resist deformation (decreases its elasticity). In the skin, muscles, ligaments, blood vessels, and visceral organs collagen plays a very significant role and with increased elasticity, secondary to abnormal collagen, pathology results.
Depending on the individual mutation, the severity of the syndrome can vary from mild to life-threatening. There is no cure, and treatment is merely supportive at best, including close monitoring of the digestive, excretory and particularly the cardiovascular systems. Corrective surgery may help with some of the problems that may develop in certain types of EDS, although the condition means that extra caution is advised and special practices observed.
I’m 36 years old, trapped in the body of a 90-year-old with the mentality of a 19-year-old so I am guessing the average for me is… 24 years old so if I tell people that its not really a lie right? LOL! I am married to the greatest man in the world, and the proud mother of eight rescued furry four-legged kids (some people call them dogs!). I totally believe in the healing powers of animals. They have rescued me in so many ways that I often tell people I am their rescue mutt.
I suffer from EDS. I am both hypermobility type and Vascular type. Can I get a “WOO HOO!” for winning the dysfunctional genetic lottery, lol? It is a horrible disease; the hypermobility type caused me a great deal of pain. I suffer from numerous subluxations and dislocations. Every joint is prone to it.
I have intense pain, swelling, skin discoloration etc…I am hypersensitive to barometric pressure changes and can predict weather better then any meteorologist I have ever seen on TV. (hmmmm… possible career path, lol?) The vascular type is worse because that is the potentially fatal type. I have suffered some complications from the vascular type already. I’ve had three small strokes, a brain aneurysm and two AVM’s (arterial venous malformations).
I went through a grueling period in my life during this time and when I came out of the brain surgery alive, I came out… renewed. I now get that life is too short to put up with toxic people and toxic situations. Negativity spreads like wildfire and it can really affect your health. One of my favorite quotes is, “When you’re up, your friends know who you are. When you’re down, you know who your friends are.” This cannot be any more true than when you are sick with a debilitating disease. With that being said I look forward to taking a journey with you, whether or not you have EDS, so we can learn together, laugh together and learn how to live a fulfilling life together.
I will look to end each entry with a question in hopes of learning more about you all and sharing some great tips and secrets! My question for this entry is this:
“What do you enjoy doing most in your down time and has that activity/hobby been altered since you became sick?”
Peace and Paw prints!!
This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.