We will be collecting patient stories and photographs to post on our website, Facebook and soon, Instagram.
The Wilson Warrior stories have proven to be inspirational and we think we need a way to collect any story.
If you want to share your story please include a photo and email them to me at [email protected]
You should be an adult or have a parent give you permission to do this. We reserve the right to edit.
My name is Delayne Di Gangi and I am a Wilson's Disease patient. I just recently graduated from Clemson University with a degree in Bioengineering. My passion for bioengineering stems from my Wilson's diagnosis and everything I have endured due to this disease. I want to be able to help other people with medical issues by dedicating my life to biomedical research.
Here is my story:
On March 30, 2015, I was a seemingly normal, healthy, 18-year-old enjoying the last semester of high school. I was a varsity soccer player and deciding between spending my college years at Cal Poly in California or at Clemson University in South Carolina the following fall. My parents took me to the doctor because my skin and eyes were yellowing dramatically. A blood test revealed that my liver enzyme, as well as most of my other blood work, was extremely elevated. I was immediately rushed to Northwestern Memorial Hospital by ambulance and admitted straight onto the transplant floor. Countless doctors began to stream in from hepatology, neurology, gastroenterology, ophthalmology and many other departments.
It was in the early hours of April 1st that we initially heard about Wilson's Disease. The doctors explained the condition and its rarity. They said if left undiagnosed and untreated Wilson's will result in a liver transplant. The doctors were fairly certain that I was suffering from end stage Wilson's Disease and registered me on the national transplant list. My team of doctors assured us that once they confirmed that my ailment was Wilson's, I would rise to the top of the list as a status one patient.
Many tests were done in search for this diagnosis. One test was done to analyze my urine, which was now as dark as coffee. The result was the first confirmation that I in fact did have Wilson's Disease. On April 3, 2015 I was listed as status one. During my time in the ICU waiting for a lifesaving liver transplant, I underwent many procedures to prolong my life and keep me stable. One of which is called plasmapheresis. This was done by attaching two needles to the catheter tube that was inserted in my heart. Simply, my blood was being taken out of my body through one of the catheter tubes. It was then run through the apheresis machine. Once in the machine, my blood cells were separated from the plasma and the copper was stripped out by spinning the blood at high speeds. After, my blood cells were mixed with replacement plasma and the new mixed blood was then returned into my body through the other catheter tube. This procedure took two hours each time. My parents and I would sit and watch the large bag fill with another dark brown fluid that is supposed to be white. Beyond the plasmapheresis, I was also given medicine in hopes of eliminating the ammonia from my system before it started to negatively affect my brain. All of these were temporary treatments to extend my life.
Nearly one week after my original acute liver failure and diagnosis, on April 5, 2015 I received a lifesaving liver from a deceased donor. Today, in hindsight, I think about other symptoms I had throughout my childhood that could and should have pointed to Wilson's Disease. I was tired and moody. I constantly wanted to chew on ice. The size of my legs was getting bigger each year even though I was an avid athlete. In fact, we even went so far to blame the enlargement on my years of soccer. We thought it must be muscle development from all the time I spent playing, but my legs had been filling with more fluid every year due to my failing liver. The larger missed symptom was when I was 16, two years prior to my liver failure. I had been suffering from extreme fatigue and could not chew enough ice. As a result, I had blood work done to rule out anemia. The bloodwork did not show signs of anemia but did show high liver enzymes! Tragically, this sign was misdiagnosed, and I was sent to an oncologist instead of a gastroenterologist. I was instead diagnosed with mononucleosis and my Wilson's Disease continued to go undetected. My hope and purpose in sharing my story is to spread awareness about Wilson's Disease. Through education, and stories like mine, there is a chance that someone who is suffering from Wilson's will be diagnosed early enough to treat the condition efficiently and effectively before it can do great harm to anyone else.
Imagine you are 19 years old, you are about to enter your 3rd semester in college, you live with your best friends from high school. One day you wake up, you notice that you’re drooling, can’t speak, and you hardly recognize yourself in the mirror.
That was me.
My name is Mason Owings, and I would like to share my life changing experience.
I am a native of Dallas and graduated from Southlake Carroll high school. I took AP Calc, AP writing, and AP lit…graduating with honors in 2008. I was your typical nerdy college student majoring in New Media Art. I had attended TCCC and had transferred to the University of North Texas. I loved the ladies but not as much as I loved to play video games. World of joy Warcraft was my passion: my friends were mostly online, and I liked it that way.
In July 2009, I had a sudden increase in anxiety.
I started to worry about the little things: How was I going to get to class on time? How was I going to pay for textbooks? How was I going to find a job? I was entering my first semester at the University of North Texas.
I had a doctor's visit and was diagnosed with General Anxiety Disorder and was put on medication. A month passes by and I start to lose my balance, and I start to drool a lot.
I was referred to get an MRI. I had an MRI which had evidence of prior strokes and new strokes which brought me to the hospital where I stayed for a few nights.
Flash forward to October 2009, I finally receive a diagnosis of Wilson's Disease after being accused of huffing paint.
What is Wilson's Disease?
Wilson's Disease is a disorder that does not allow your body to process copper.
Instead, it stores it in your brain, liver, and kidneys which cause stroke-like symptoms, cirrhosis of the liver, and other issues.
This is a very rare genetic disease. Only 1 in 30,000 people are known to acquire it.
I had over a hundred doctors come see me, that's how rare it is.
But before you get better, you get worse! Thanks to the treatment.
I underwent chelation therapy which binds the copper to the drug, allowing the copper to exit the bloodstream through the urine. In doing so, the copper causes more damage to the affected organs as it exits the body.
For the next two years, I declined cognitively, and I lost my ability to walk and talk.
I entered Pate Rehab, where I regained my ability to walk and talk. I was discharged and entered a group home.
In 2011, I had some behavioral issues while I was in the group home, I got into a fist fight, and got kicked out. Thankfully my case manager referred me to My Possibilities, and that's when things started to change for the better. My Possibilities is a continuing education for adults with cognitive disabilities.
I join My Possibilities in June 2012 as a Client, and because of the confidence, ambition, and a sense of purpose that the MP program provided, I was able to bring my cognitive skills back from a 4th-grade level to college level.
I am currently enrolled at Collin College where I am focusing on getting my associates degree. I am also a part-time Vocational assistant at My Possibilities.
I never noticed a disabled person before I became one. I never saw them in a crowd never interacted with them, one on one.
It was only after I became disabled that I started to see them. They want the same things I want: Friends, relationships, to experience life.
We want to be included, loved and to be special to others. I make every day count and assure that our hugely important people get every opportunity that I got so that they can reach their full potential.
Thank you for taking your time to read to my experience!
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