I am battling the many symptoms caused by my chronic illness called Ehlers-Danlos Syndrome, also known as EDS. EDS is a rare connective tissue disorder that causes the body to create defective collagen. Collagen is the building blocks and the glue that holds our bodies together. EDS has been known to cause itestinal ruptures. One of my only options would be to remove my colon although due to my illness my body does not heal properly so this could result in death.
Along with my EDS, and Chronic pseudo-intestinal obstruction, I also suffer from osteoarthritis, bladder and GI mobility disorders, rectal prolapse, spinal stenosis,degenerative disk disease, postural orthostatic tachycardia, anemia, toxic dumping sydrome, acid reflux, gastro-paresis, and a variety of others.
My health hit a downward spiral at 14 years old, by 16 I was hospitalized for the innability to have a bowel movement for 5 months, I missed months of school and lost many friends. Today my disease has gotten so bad that I cannot pick up anything over 4 pounds without dislocating my joints. I've been left in agony without answers.
Due to the rareness of my illness most doctors refuse to even see me. My only hope is to get to the Mayo Clinic. I know that I will never be able to live disease free, I just desperately want some relief. I want people to understand my fears and the life that I am forced to live.
I am Tess Raine Robinson, I am not my disease.
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