Badges (1)

About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (2)

Dec 28, 2016 · Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) in Autoimmune Diseases

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.

Dec 28, 2016 · Chronic Erythema Nodosum & Ehlers-Danlos Syndrome (EDS) in Autoimmune Diseases

Hi, I have Eyrthema Nodosum and also a Connective Tissue Disorder called Ehlers-Danlos Syndrome (EDS). It’s pronounced Aylers-Danlos. Maybe worth looking into for yourself. Good luck.