Well, my 2 (now adult) children and I have Ehlers-Danlos Syndrome (EDS).
• My youngest has crossover symptoms of Marfan Syndrome.
• What we know about EDS/Marfan Syndrome…
• EDS/Marfan Syndrome are “Connective Tissue Disorders”.
(It is believed that Abraham Lincoln had Marfan Syndrome, Michael Phelps has Marfan Symdrome, And Austin Carlile from ‘Of Mice & Men’ has Marfan Syndrome).
• “Connective Tissue” disorders means Arteries / Vessels / Tendons / Ligaments / Nerves / Muscle / Bone / Skin…are abnormally weak & fragile. Can easily tear, burst, rupture, fracture…spontaneously, during sleep, with little or no trauma, or often times, no known cause. This leaves endless, potentially life threatening injuries, issues, and complications.
• Vessels & Arteries of our hearts, head & eyes are closely monitored for enlargements, Aneurysms, or Aortic Dissection (John Ritter).
• Joints are weak & unstable, hypermobile, bendy, flexible, or “double jointed”…
• Weak tendons & ligaments cause joints to dislocate…easily, repeatedly, permanently. This includes Ribs, Ribs from Spines, Jaw, and Retinas of the eyes…
• Repeatedly dislocating a joint then leaves chronic joint pain. (like Arthritis). Often times mistaking as simply “growing pains”.
• Chronic pain & fear of injuries causes anxieties, insomnia, depression.
• Because everything is connected, everything is somehow affected causing endless “secondary” conditions: POTS, IBS, Scoliosis, Osteoperosis, Costocondritis, Neuropathy…
• EDS is inherited (genetic).
• There is no cure.
• The only treatment is close monitoring, dealing with each issue as it arises, and avoidance to preserve and protect, as best as possible.
• We post about Ehlers-Danlos Syndrome for that slim chance that:
1) It just might help someone else.
2) Someone else just might have a snippet of info to offer.
3) To Educate.
Because, the more educated family, friends, teachers, schools, even medical professionals are, the easier it becomes.