Meet Amanda who was diagnosed with Scleroderma at age 5 and who shared her story with Scleroderma News. She lived a daily normal life until she has developed an ulcer in 2008. When scleroderma affected her left leg it shrunk it down so having a “tiny” leg was normal for her. She is now 33 years of age and she wrote a testimonial on how the disease affected her life.
Hi my name is Amanda. I am 33 years old and I was diagnosed with scleroderma when I was about 5 years old. Here is a bio I wrote on how it affected my life.
While most mothers were having fun with their children, my Mom was searching for a doctor who could give her answers as to why I was constantly falling. At the time I was three years old, finally at around the age of five I was diagnosed with Scleroderma. My left leg was significantly impacted with atrophy. It was a lot thinner than my right leg and shorter. Most people confused my Scleroderma with Polio.
In 1988, I was six and underwent my first surgery. In hopes to lengthen my left leg, an “Ilizarov apparatus” was put on my leg from below the knee to my ankle. I remember having a going away party with the students, teachers, and Principal in the first grade. Having the Ilizarov made me feel different. Everyone stared at me. I hated going to therapy because it was so painful. Each night my Mom would have to rotate the screws and clean the pins.
I returned to school about a year later. I was home schooled during that time. From that moment till fast forward 2009 I lived a pretty “normal life”. Dating was always nerve wrecking. I was always concerned about not being pretty because of how different my left leg was.
In 2002 I had my first son, Sebastian. No issues at all. In 2007 I met Isaac, who I married in 2008 and we had a son Nicholas. Shortly after Nicholas was born I discovered a small ulcer by my left ankle. My treatments began with weekly wound care for two years. During this time there was no progress to the ulcer, it had only gotten bigger. Later other treatments included skin grafts, weeks of hyperbaric. My husband and I traveled to UT Southwestern to see a Scleroderma specialist. Ultimately after several doctor visits from different doctors, I was told the atrophy in my ankle had caused the veins in the ankle area to become occluded.
I learned to just live with the ulcer as part of me. I would change the dressings daily and because I never wore dresses or shorts most people did not know anything was wrong with me. The pain from the ulcer was excruciating. Many nights I cried as I could not handle the pain.
With many doctor visits and treatments comes time off work. Unfortuately, I was terminated from my employer and later lost our home. I became very depressed and blamed losing our home on myself. Had I not been in need of doctor visits I would have been at work. I felt like a failure to my husband, to my sons and to my family. Since the age of 18 I had always held a job and now I didn’t have a job or home because of my illness.
In 2015 life was beginning to normal. I was offered a position at a medical university and met some amazing doctors along the way. One day in the parking lot I had asked the opinon of one of the doctors and let him in on what was “wrong with me”. I still had the ulcer and it had grown bigger. He immediately called a colleague and I was seen immediately. After blood work, x-rays, and cultures I was admitted into the hospital with pseudomonas and another infection not only in the ulcer but to the bone. Days later I was advised amputation would possibly be the best solution for my future health.
No!!! Amputation was not an option. Why would anyone want to lose their leg? Why would anyone want to look different? Why would I have to miss work again? Would I lose my home again? I told my doctor “I’d rather die”. He said he would leave me alone to think about the procedure but that the infection could spread and I could face life threatening complications. I did not care. All I wanted was to die and not have to deal with anything Scleroderma was throwing my way. My logic was people die every day and life goes on. My husband, sons, and family would continue living life and I would be free from pain and suffering. I was released from the hospital days later and returned to work. My mind was made I would start over with wound care and see other doctors for a second opinion. Granted the doctor who I saw is claimed to be one of the best doctors in our region.
Almost two months later it was a normal morning, making sure the kids were getting ready for school as I got ready for work. As I removed the dressing to proceed with cleaning my ulcer I discovered maggots. Six small maggots crawled along my ulcer. Seeing these maggots was the worst feeling of my life. I relate maggots with death and seeing them on me made me feel like my leg was dead. I called my doctor and told him what I had seen and that “It was time”. I notified my husband and mom that I was going to be admitted to the hospital for observation. After discussing with my doctor a decision was made that I would have my leg amputated below the knee.
I was nervous and felt numb both days leading to surgery. No matter what everyone told me “this is for the best” “God has another plan” “you’re going to be ok” “people have this all the time” “there are so many advances in prosthetics” I didn’t want to hear any of it. No one knew what I was feeling. I finally had my amputation Friday, Septemner 18, 2015. The first thing I did was feel my leg to feel where my leg no longer was. The next morning physical therapy got me up and walking with a walker. I took a few steps and made my way back to bed. It was the first time I had stood up knowing only one foot would hit the floor. I quickly moved from walker to crutches. By the time I was released from the hospital I was using crutches, only using my wheelchair for long distances.
The first few days home were not what I imagined. Everything had changed. I could not longer carry a glass of water. I could not cook for my family. I had my moments of weakness and pity. I cried alone in the shower where no one could see or hear me, but just as my logic of life goes on. Life had to go on after the loss of my leg. I started trying to live like I did before. I hung out with my family and my friends. My “tribe” is amazing. The best friends anyone could ask for.
Three weeks after surgery I am back and work and learning to adjust. Like I said I have my moments of sadness but I will continue to move forward as much as I can. I don’t like to be called a hero or an inspiration. I’m just me.
Learn more about the disease here: http://bit.ly/learnscleroderma
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