My name is Chanel. I am a 29-year-old wife and proud cat mama! I started this website to keep my family and friends updated in my rigorous treatment for severe Mixed Connective Tissue Disease, and its comorbidities. 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 treatment-refractory MCTD in 2011 and underwent a life-saving Hematopoietic Stem Cell Transplant or HSCT (also known as a Bone Marrow Transplant) in late 2016. I experienced two beautiful years of remission post-transplant until my disease re-activated, causing widespread damage in my internal organs. In 2019 I was placed back on heavy immunosuppressive treatments and began to once more rely on medical devices for survival.
MCTD is a rare autoimmune, connective tissue disease with clinical features of three distinct diseases - while also having a very rare antibody; U1-RNP. The three distinct diseases include Scleroderma (Systemic Sclerosis), Systemic Lupus Erythematosus (Lupus), and a form of Myositis. In most cases, these diseases cause decreased mobility, diffused organ failure, and eventually death.
In 2019, after nearly two years free of disease progression, my immune system relapsed to a pre-transplant stage. My body once again began attacking otherwise healthy organs. Treatments were restarted, medical devices were re-implanted, and square one became my home yet again.
These diseases 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 every day. These diseases have no cure, only 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!
My Diagnosis Process
In 2011 I was a young bride to be busy with work and wedding planning. I was overcome with excitement and joy, so when I started noticing odd pains in my body I ignored them, shrugging it off as stress. As our beautiful wedding day came and went I noticed my symptoms didn’t fade as I had hoped but worsened.My hands had begun to change, they would turn a violent purple and swell so much that I was unable to wear my brand new wedding ring. My joints ached, I was losing hair, and the tips of my fingers looked as though they were dragged against sandpaper. When the tip of my thumb became an oozing, un-healing sore, we decided it was time to see a doctor. I saw my primary care physician who immediately diagnosed me with severe Raynauds and referred me to a Rheumatologist with a somber mannerism. It was at that appointment that I knew something was very, very wrong, and prepared myself for a monumental change. I, however, had no idea the depth my life would transform once I stepped into that Rheumatologists' office.
I entered equipped for the worse, but still was unprepared for the news I received, everything happened in a vague blur when I look back on that day. He looked over my tightening hands, erupting nail-fold capillaries, purple fingers, and told me I had Systemic Scleroderma. The prognosis was not good. I left the office not knowing what it truly meant but had a handful of prescription drugs to acquire pamphlets to read, and a new way of life to start. I was to return in the next few days for the results of my blood work to solidify my diagnosis. I retuned not a week later to receive surprising results. Not only did I have an extremely quick onset of Systemic Scleroderma, my blood work also reflected positive results for Systemic Lupus, and Polymyosists - with a very high tittered U1-RNP. I was giving a full diagnosis of Mixed Connective Tissue Disease, with the primary issue being Systemic Sclerosis (Scleroderma).
We began drastic immunosuppressant treatments. Within the first two months after my diagnosis digital ulcerations became so severe, I was hospitalized for the impending amputation of my thumb and pointer finger. Luckily, a drug called Flolan saved my dying digits. Little did I know, I would return in that same situation many, many times for the multiple digital ulcerations. A year and a half riddled with pain, uncertainty, emotional instability, the loss of our first home, mounds of medical debt, and more doctors appointments and procedures than I could count. Eventually, the Raynauds become so severe, and the ulcers so diffused that my physician referred me to an orthopedic surgeon for a Digital Sympathectomy; a surgery to remove the nervous system responsible for the blood vessel dilation in your palms.
In my third year of diagnosis, my health took a turn for the worst during a lengthy hospitalization for Guillain-Barre, which resulted in near-fatal consequences. After weeks of Acute Rehabilitation to re-learn how to walk, talk, and regain my motor skills I found integrating back to my normal life harder than expected. I was unable to perform working functions adequately and had to step down from my career as a Montessori School Teacher. The year that followed held the deterioration of my lungs and respiratory muscles. My lung function dropped dramatically, I was desaturating, and my diaphragm functionality plummeted to almost non-existent - leading to the use of supplemental oxygen. My physician started me on drastic chemotherapy infusions which did improve my lung quality enough to leave my tanks for a period of time.
Everything changed when my specialist referred me to a Clinical Trial for severe, treatment-resistant autoimmune patients in 2016. I was to undergo an Autologus Hematepoietic Stem Cell Transplant. This process is also known as a Bone Marrow Transplant. After months of evaluations at different hospitals around the country, I was found to be a candidate in Chicago. My transplant process completed in January of 2017. It was one of the absolute worst experience of my life, but it is incredible to see the miracles it wielded! I experienced two beautiful years of remission until my disease once again re-activated, causing widespread damage in my internal organs. In 2019 I again began heavy immunosuppressive treatments and required major abdominal surgery to obtain any viable nutrition.
My Outlook on Life
Two thousand and eleven, I remember not as the year my life became sealed with an expectation date, but as the year I truly started living. My eyes have been opened to so many wonderful things in this world since being diagnosed. Having your mortality be so evidently tangible set so much into perspective. I am fully aware that this disease does not intend to leave survivors and that I am probably not going to get as many years as I had hoped - but I absolutely plan to make the most of them!Everything changed when my specialist referred me to a Clinical Trial for severe, treatment-resistant autoimmune patients in 2016. I was to undergo an Autologus Hematepoietic Stem Cell Transplant. This process is also known as a Bone Marrow Transplant. After months of evaluations at different hospitals around the country, I was found to be a candidate in Chicago. My transplant process completed in January of 2017. It was one of the absolute worst experience of my life, but it is incredible to see the miracles it wielded! I experienced two beautiful years of remission until my disease once again re-activated, causing widespread damage in my internal organs. In 2019 I again began heavy immunosuppressive treatments and required major abdominal surgery to obtain any viable nutrition.
My Outlook on Life
Battling these conditions has opened incredible doors in my life and brought about tremendous changes in myself as an individual. I am now a stronger, more confident woman -- even in this broken body. I feel I can make a real change in the world through this new medium, bringing awareness and compassion to those battling similar illnesses. While I do not find much "happiness" in this trial, I find great joy in the blessings I see it reap. Life becomes so much simpler when you let go of what you intended your life to be and instead celebrate all that it is.
Hugs,
Chanel White
