Tami Prather

Hello, my name is Tami and I would like to share my story for others whom either have or know someone with scleroderma. I am 31 years old and I have never known a life without scleroderma. I was diagnosed at age 6 with Morphea and linear scleroderma. My lesions were and still are very widespread, covering most of my legs, causing my left leg muscle to not grow normally through childhood (I like to call it my chicken leg because it’s so skinny), lesions on my arms, chest, back, torso. I grew up knowing I was different and unique I like to say. I grew up being stared at, people's faces kind of freeze for a moment when they see the lesions and normally they don’t ask. Children though they ask often why do I look the way I do and to this day it is still hard for -me to chose the right words to explain to a child why I look different. If I had a penny for all the questions I would be rich.

I spent my childhood not feeling good, being the one to catch every cold, see doctor after doctor. Then as high school years approached I began to feel better and was able to enjoy several years without serious problems. I decided after spending my life in hospitals and doctor's offices that I wanted to be in the medical field to help others. Somehow being a x-ray tech is what I chose, though I had never broken a bone, I wanted to be able to comfort those that come in scared, sick, or hurt even if it was just for a chest x-ray. I believe scleroderma allowed me to have a greater sense of empathy for others.
 
As time passed my body began to hurt more and more. I began to be short of breath, nauseated, heartburn, severe joint and muscle pain. Once again I was back to doctor after doctor, tests after tests. I began to no longer enjoy my job because at the end of the day on the long ride home I would break down and cry from the pain. It would take me forever to be able to get out of my car and walk to my door. And as each time a test would show a new problem it meant a new doctor. I began to dislike most physicians within the first 5 minutes of meeting them. They would be clueless as to what scleroderma even meant. I had to educate them. Some doctors would flat out tell me "your problems are above me and you need to go somewhere else to see someone". How angry and depressed I would be. Its not like I wanted to see so many doctors, I just wanted some relief from the pain and not to be told to just go home and deal with it. I would go to the Mayo Clinic and hope for help, but an 8 hour drive and weeks stay in a hotel costs to much so it was very hard to find a caring doctor. I finally had to give up my job that I loved. I knew my job was doing more damage to my body and my quality of life was not good. I was living a life of get up go to work, come home go to bed, if I had a day off I spent it resting and going to bed by 6pm to get enough rest to make it through the next day of work. And so began the long process of filing for social security disability at 27 yrs old. If I thought I felt bad then boy did I feel worse from the stress of no health insurance, no income, living by myself. It seemed for a time the system wasn’t meant to help me, I had no children so public aid is even harder to get being childless, and how am I take my over $2500 a month of medicines with no income? A year after I quit work I was finally approved for disability. Public aid would pay only after I met a horrendous spend down each month out of my own pocket until medicare would kick in. 

I thank God every day that one day while reading my Scleroderma Foundation emails I had seen about a clinical trial, though I didn’t qualify for the trial because my lungs were to damaged, I met the doctor of my dreams. Finally! A caring and intelligent doctor whom actually had scleroderma patients. Such a miracle to finally find a doctor that understands scleroderma, even if it’s a 3 1/2 hour drive one way, its still worth the trip to see him.

For some reason I no longer was considered as just morphea and linear scleroderma, but systemic, which is not suppose to happen but as I have found in life nothing is normal with scleroderma. Each and every patient has different manifestations we are all connected by one word-scleroderma. Until someone has or knows someone with scleroderma they can never fully understand what a day in our shoes feels like. People do not understand what they can’t see. If I had my lesions covered and didn’t walk with a limp people think I am young and healthy, why aren’t I working?,why do I park in the handicap spots?, etc. Though I have scleroderma it doesn’t have me, I truly know no life without scleroderma and I wouldn’t change that for anything because I am me, a girl with the funny sounding illness, the girl with the lesions, the girl that is strong mentally, the girl that never gives in or gives up.
 
Thank you for allowing me to share my story, and hopefully it will allow others like me to know they are not alone.