- Posted February 16, 2014 by
This iReport is part of an assignment:
Living with a rare disease?
- dsashin, CNN iReport producer
I always said my body hates me. It twists and turns, it’s weak, achy, and tired.
I’ve taken a silly Facebook quiz that says I have a body of an 80 year old, sad when I’m only 30. What’s to blame for my beautifully twisted body… a rare disease.
It all starts with Neuroblastoma, a "rare" childhood cancer that affects the nerves of 1 in 660 kids. It most frequently originates in one of the adrenal glands, but can also develop in nerve tissues in the neck, chest, abdomen, or pelvis. 700 children in the US are diagnosed every year, and every 16 hours a child with Neuroblastoma dies.
Imagine a normal, healthy, toddler turning into a not so happy, sickly, paralyzed 11 month old. That’s what my parents faced. The doctors informed my parents that I only had a 15% chance of surviving Neuroblastoma. I was now that 1 in 660 that everyone thinks will not happen to them. My tumor wrapped around my spine causing me to undergo two spinal surgeries, chemo and radiation for many years. After that I was given a clean bill of health; "you're cured, hallelujah, Amen."
However, once you "survive" you are essentially forgotten. Everyone just assumes you go on your happy, merry way. That is far from the truth. In the wake of having childhood cancer, Neuroblastoma, you find yourself with a list of other problems. Nobody ever tells you that the "lifesaving" treatment is poison that will ultimately ravage your body, damaging your good cells along with the bad. The long term effects of treatment are staggering.
Twenty-seven years later I find myself suffering from many conditions; some life threatening, while others just painful, annoying. A few conditions are on the "rare disease list," others not. I have severe kyphoscoliosis leading me to so many spinal surgeries I cannot even remember the correct number. I have memory problems, which might explain not remembering all my spine surgeries I say with a laugh. I have to be careful not to fall because I am “fragile” from osteoporosis. Pain is never ending, with osteoarthritis, nerve damage, and who knows from what else.
Of those rare diseases, I have Barrett's esophagus, a rare condition in which the tissue lining the esophagus is replaced by tissue that is similar to the intestinal lining. This is bad because it increases your risk for a rare type of cancer called esophageal adenocarcinoma. I say lovely, just another thing I have to add to my never ending health watch list. I also have pulmonary hypertension which is a disorder of the blood vessels in the lungs. In my case this causes stress on my heart leading to early onset heart failure. It sure makes life a struggle when you have two little girls at home to chase around.
I lie in bed at night thinking, this is not how I imagined my life turning out. It is 2014… 2014! You would think by now advancements would be great. You “Go Pink” in October for breast cancer, but not “Gold” for childhood cancer. Cancer is more than breasts and prostates, children are dying – and the lack of funding and research is sad. It doesn’t even make sense that no new drugs have been created in 20 years for childhood cancer. It is just crazy.
If Neuroblastoma had better research, better treatment, a cure, maybe I wouldn't be in this situation right now. I wouldn't have to deal with Barrett’s, pulmonary hypertension, etc. Maybe I could run/jump play with my girls. For now I will just have to have hope that someone, anyone will take notice, will listen.
Rare Disease Day is a day where we can all come together to bring awareness. To stand up for the “Little people” who do not get that much attention. It’s time to raise awareness amongst the public and decision-makers about the impact rare diseases have on our lives. “Care about Rare.”
"Nothing that I can do will change the structure of the universe. But maybe, by raising my voice I can help the greatest of all causes—goodwill among men and peace on earth.” ~ Albert Einstein.