I wanted to take a moment to share an article about a rare inherited disease, known as carolis disease, written by an amazingly strong and beautiful young lady that I met recently via facebook. This girl…this woman…is so wise and deep beyond her years and dealing with things that no one should ever have to deal with. Young women today struggle with their own identity and who they are. Very few are blessed with the opportunity to learn this early, but when they are, the lesson can prove quite painful. One day, I want to have a little girl. I hope if my daughter ever has to deal with the heartache of losing her health and her childhood that she finds amazing strength beyond my comprehension just like Jessica.
My body might be broken, but my vision is perfect
The term, Caroli’s disease, refers to a rare, inherited disease in which the bile ducts in the liver become enlarged and may cause irritation, infection, gallstones, or even cancer. Helpful treatments can include Ursodeoxycholic acid, also known as Ursodiol, which can decrease the frequency of Caroli’s disease complications due to gallstones and cancer (cholangiocarcinoma). In my case, I had to have the majority of my liver removed because of the possibility of cancer, and doctors’ lack of knowledge concerning my condition. I underwent months of invasive testing in order to inspect the mysterious mass in my liver, when in conclusion, results demanded a resection.
On February 10, 2010, at 12 years old, I had over 55% of my liver removed. After the procedure, the section of my liver grew back, as the liver is the only organ known to regenerate, but it is unclear whether the bile ducts or my biliary tree returned. This means that the waste produced by my body can overflow or or pool up. The build up of waste toxins cause me constant sickness almost every time I consume anything from water to steak. Nearly every meal is a strike at my luck.
Because I was likely born with this disease, the inability to eat regularly has resulted in a vitamin deficiency. My medical team suspected that I had bone marrow edema (swelling of the bone marrow) at 6 years old as a result of finding old fractures in my spine. Doctors have also diagnosed me with hypermobile joints. Because of this, the slightest trauma to any bone or joint could crack it or dislocate it. I am a prime candidate for arthritis in my later years.
My entire life has been filled with constant pain — pain that would send me writhing on the floor, in tears. Pain that makes you wish you could just die in order to put a stop to it. My medical history is extensive, something to add to the list is sjogrens syndrome, lupus, and bechets disease that my mother and two uncles have. These are all autoimmune diseases. Autoimmune diseases cause your immune system to attack itself resulting in many adverse side effects and sometimes incredible pain. For my family, these have caused nonstop suffering and I may have inherited these disorders as well.
Starting at only a few months old, when my lungs nearly collapsed due to mistreated pnuemonia, to today, in 2012 at 13 years old, my lifelong struggle for a normal life has resulted in an immense amount of depression. On the interior, there are cracks — cracks that threaten who I am, my family, and the basis of my life. Most people don’t understand that, but when you live a life pokes and prods, polluted and tainted with radiation in order to determine your medical situation, then you understand. People look at me, and see darkness. Sometimes, their assumptions are correct. I often feel that I am broken. But if you have been fighting your entire life just to make it through another day, you would get tired of trying too.
The scary part is, there’s no way to know whether or not my caroli’s disease has spread to the bit of properly functioning tissue I have left in my liver. Nearly every person who has been diagnosed has not survived because by the time doctors diagnose older adults, they have already entered liver failure.
I am one of the youngest people to have ever diagnosed with the disease and one of the few known to survive thus far. I’m a famous case, known to doctors around the country. They predicted that I would have entered liver failure in my early 20s if they did not discover the disease when they did. My life, from the beginning, has been overruled by these things. I live a life that is unclear and unknown, and many people don’t know this. I have written this, to show you what’s inside. Why I miss so much school, why I am so anxious, and why I am the way I am. My rage is a result of living a life without control over my body.
For those who complain because they have a headache, I have lived this life, full of pain and torture, and hardly ever complained because this is the life God has given me, and no one else is going to live it for me. I am proud of what I have fought for. I never let myself go, even when I had the opportunity on Valentine’s day of last year, when I had a 25 minute seizure, and remained unconsious and unresponsive for what seemed like days to my family.
Please, remember that whether you are head cheerleader, president of student council, or blue ribbon winner at the celebration, that as I lay in my dear hospital bed, I dream of your life. When times get tough, remember that it could get worse. For me, my inspiration to stay strong is my best friend, Katelyn. She has osteosarcoma, bone cancer. It has spread to her lungs, and the chemotherapy that used to treat it has caused her kidneys to fail. She is now on dialysis every other day — the only thing keeping her alive.
The chemo has caused a new kind of cancer in her skull that in a short amount of time, spread to her eye. Both cancers are taking over her body by the day, and while the chemotherapy isn’t killing a single bit of it, she still smiles and is the most wonderful person I have ever met. Despite her incredible strength, she told me just a week ago, that after this round of chemotherapy, she’s done — done with surgeries, chemo, dialysis, blood transfusions, everything. After she quits all of it, the time she will have to live is uncertain.
Imagine your best friend, your saviour, only having a month to live. The person you have suffered with, the person you look up to when you need guidance, losing their battle, right before your eyes. These are the things some kids have to live with in our day and time. Please, take time to think about kids like Katelyn and me, and how at 13, while you all are cheerleading, playing football, and soccer, we are wondering how long we have before our battle is lost. Take the time to look beyond a person, and see who they are on the inside. What you find, might suprise you.
Jessica’s favorite shirt is ScarsRSexy Shirt. Support teens like her trying who think their scars are beautiful by purchasing a shirt!