Welcome


Hello Friends, Family, and Guests! 
My name is Chanel White and I am 25 years old. I started this website to keep my family and friends updated in my rigorous treatment for severe Mixed Connective Tissue Disease. I have found that nothing is more powerful than putting your thoughts into words. It has been both an incredible decompression for me emotionally, and a wonderful opportunity to educate those seeking a realistic glimpse into the life of someone suffering a serious illness. I was diagnosed with MCTD in 2011, and recently underwent a life saving Stem Cell Transplant in January of 2017. The two month process took place in Chicago - the only hospital in the country who would treat my rare illness. 

MCTD is a rare autoimmune, connective tissue disease with clinical features of three distinct diseases, while having a very specific antibody called an U1-RNP. The three destinct disease include: Scleroderma (Systemic Sclerosis), Systemic Lupus Erythematosus (Lupus), Myositis. These disease wreak havoc through all systems of your body including, but not limited to: muscular, vascular, nervous, circulatory, integumentary, digestive, and respiratory. In most cases these diseases cause decreased mobility, diffused organ failure, and eventually death. 


I have received many other diagnosis over the years, such as Vasculitis, POTS, Autonomic Neuropathy, Fibromyalgia, and even had a close call with Guillain Barre Syndrome. All of these co-morbid disease were caused by nerve, and vascular damage which occurred because of MCTD. Anything made of connective tissue (which is just about everything) becomes the target of my overactive immune system. In 2014 became tube fed as a result of my failing digestive system, and in early 2015 had a Port-O-Cath placed in my chest for easier intravenous access during my frequent hospitalizations. Also that year I faced the failure of my respiratory muscles, and the declining function of my lungs. I was reliant on 24/7 supplemental oxygen for almost one year. After 9 months of chemotherapy my lungs improved, but the rest of me continued to decline. I found myself barley able to get out of bed every morning due to joints so swollen my hands looked like clubs. My physicians decided it was time to take drastic measures to ensure this disease did not take my life. I was referred to a Clinical Trail program that preformed Stem Cell Transplants on severe, treatment resistant, autoimmune patients. I received my transplant in January of 2017. It was the hardest thing I have ever faced. 

These disease are what you call "Invisible Illnesses" because for the most part, they are unseen. To the typical bystander I look like your average young woman; however, my body tells a much different story. Though I don't look sick, I am actually fighting for my life every minute of everyday. These disease have no cure, only experimental treatments to help the patient with discomfort, mask symptoms, and hopefully prolong life expediencies. Thank you for taking the time to read about my journey.