The story of Maritiza
Hi my name is Maritiza Williams I have several rare diseases. I have Ehlers Danlos Syndrome, Idiopathic Innercranio Hypertension, Tethered Cord Syndrome and Cranio-Cervical Instability. I was diagnosed with the IIH in 1985 at the age of 15. I almost went blind because the swelling in my brain crushed my optic nerve. I was in the 11th grade and I was pulled out of school and was home-bound taught for a short while, however due to the brain damage I suffered my home-bound schooling was stopped. I was put on aggressive medication that reduced the hydrocephalus and I have remained on those medications more than 30 years later. In 2007 I fell 8 feet down a stairwell and broke my hip through the growth plate, attained a quadruple spinal cord injury and traumatic brain injury, at the time I found out I had a beta pf 43.6 after suffering from Chorio-Carcinoma, I was terrified. I starte hemorrhaging the next day and continued to do so for 16 weeks. My daughter is 9 now. However my life with the Ehlers Danlos, Tethered Cord, Cranio-Cervical Instabily and POTS would ultimately take a toll on my life. My spinal cord has collapsed on itself as has many other joints. I have suffered a stroke and miscarriages due to the faulty collagen of this horrific connective tissue disorder. Even-though our family does not test positive for the vascular type we have had many family members to die of larger organ collapses and aneurysm. It is very difficult to live with ONE rare disease living with multiple ones makes finding quality healthcare very difficult. MY TWO DAUGHTERS ARE ALSO AFFECTED. BEING OUR BEST ADVOCATE IS THE BEST RESOURCE I KNOW TO BE AND BEING THEIR GREATEST CHEERLEADER IS WHO I AM. GOD BLESS YOU ALL!