The story of Tonja
I was diagnosed about two years ago with EDS. The genetics labeled me hyper mobility type but my gene variant is associated with Kyphoscoliotic type. Problem is my variant is an unknown. My spine is a big issue and was described as “floppy” by my neurosurgeon.
I suffer daily from joint pain and have considerable levels of vascular involvement. Until my variant is researched, we’re basically just guessing at what may happen. Most of the elderly in my family developed severe Kyphoscoliosis. I feel my family may have a variant of our own.
Awareness and research is the only thing that can change our situation! If not for my generation, the younger and future generations of my family. Myself, I’m nearing the stage of palliative care. There’s just little that can be done when your entire body is being attacked!