My name is Meghan Skelly and this is my extremely under detailed, brief break down of how I “Found my Fit.”
The universe works in mysterious ways; challenging us, even when we’re not ready, throwing signals our way, even when we’re not looking. I have recently experienced what I’d like to call my personal revelation; a bitter-sweet test of strength.
In September of 2012, age 26, I was diagnosed with Multiple Sclerosis. In March of 2017, age 30, I discovered I had been misdiagnosed, with Multiple Sclerosis, by four different Neurologists.
I whole heartily believe that our individual experiences in life, make up who we are. Our past and present day to day interactions, continuously sculpt our character; our, purpose and our journey. I feel as though, we are faced with challenges, to gain strength found in moments of weakness; and with new strength, comes new knowledge and the confidence to keep fighting.
At the age of 26, I was presented an issue with my prolactin, which is a hormone in your Pituitary Gland. The issue is somewhat common, but if not controlled, it can quickly escalate into something more serious. So, after some blood work, the doctor ordered an MRI to check for an “adenoma,” which is a benign, slow growing tumor, on the Pituitary Gland, located at the base of the brain. Little did I know, that MRI, those results, those images, would be the unfolding of something truly life changing for me.
A few days later, I had been quickly and somewhat casually, diagnosed with Multiple Sclerosis. They found my MRI results had presented quite a significant and concerning amount of lesions throughout the white matter of my brain. I was so confused, not even really understanding what was truly going on. I remember sitting in the Neurologist’s office, as he told me not to worry, and that he could get me started on medication THAT DAY. I instantly refused his offer and grabbed a tissue, fighting back tears thinking, what the hell is going on? How did this happen?
Allow me to fast forward and spare you the potential novel. 15 tests, 4 doctors and 700,000 emotions later, my diagnosis became more and more overwhelming. No matter how much I disagreed with it, nothing seemed to change. I was every doctor’s “Favorite Mystery Case.” It wasn’t until year 3, Neurologist number 5, that I finally found a doctor who actually put in some extra effort. She not only recognized my case as being different than the others, but she cared to listen to me and hear what I thought. As she saw me walk perfectly normal into her office for the first time, she quickly explained that, with the amount of brain lesions I had at that point, if my diagnosis was in fact MS, I wouldn’t be walking with such ease. I felt so relieved hearing that statement, but still so nervous and anxious. Anxiety rushed as I remembered asking every single doctor the same question throughout the years, “If it’s not MS, what do you think it is? Could it be nothing?” Each and every doctor answered the same way, “No, it’s most definitely something.”
I’m not sure if things felt better or worse leaving that appointment that day. I had so many new mixed emotions, my confidence continued to diminish as I felt helpless and lost in my own thoughts. I developed terrible anxiety, causing me to be physically sick. I was tired of talking about it, tired of explaining the situation, I was so drained from it all. As a graphic designer, I channel my energy into creative thoughts in order to be successful at my job. Creativity is my outlet, yet I could barely think a single easy thought with out feeling physically sick. I was truly exhausted.
I needed something new, a distraction, a new drive, something else to focus my energy on. So, I signed myself up for a 6 week fitness challenge through a gym I had never been to before. I didn’t put much thought into it, I just knew I wanted to do it; for not only my physical health, but my mental health. I was ready, I was determined to prove to myself that I still had some fight left in me. Through confidence and focus, I knew my strength would guide me. I went to the gym that day, after work, filled out paperwork and was ready to crush the next 6 weeks! It was coincidentally less than an hour later, life presented me with a larger challenge.
On March 7th 2017, I finally and unexpectedly reached my revelation. I experienced a feeling I had never ever felt before. I realized I was already facing a challenge that I didn’t willingly sign up for. I discovered, at 30 years old, that I was born with a rare genetic disease called CADASIL. A non cureable disease, due to a mutated gene, called Notch 3, located on chromosome 19. This disease slowly effects the small blood vessels throughout the body, primarily in the brain. Basically, little by little, through each decade of my life, my brain has been receiving less and less blood, causing lesions to develop and significantly increase over the course of my life. Unlike any other organ in the body, the brain does not have any collateral circulation, meaning with decreased blood flow, there is no back up, therefore proper brain function will slowly diminish; most commonly causing, chronic strokes, cognitive impairments along with an array of other symptoms varying person to person. The prevalence to which CADASIL is currently known in the population is, 4 out of each 100,000 people, which I can easily prove as untrue. It is most commonly misdiagnosed and overlooked as MS due to some similar symptoms. So, why is CADASIL so commonly misdiagnosed? There is little to no funding for this disease, as Multiple Sclerosis is the easiest disease to “farm out” at this point. So we wonder, how many other hundreds of thousands of cases are being treated the way mine was? How many terribly vulnerable people are taking serious medications for a disease they even really have don’t have? Medication that ends up making them more and more ill. How many doctors are completely unaware that this disease even exists?
I don’t think I will ever EVER forget the moment I found out. It was as if an electric pulse shocked through my body, flooding every single emotion all at once. I sat there thinking, it FINALLY all makes sense. Every single thing, every moment in my life that I couldn’t ever explain, even as a child, “made sense.” And then it hit me, as I sat there, alone on my couch, I sobbed. A cry I’d never experienced before. I felt so sad for myself, so sad for my boyfriend, my friends and family. I felt deceived and lied to in a sense, I was angry, discouraged and instantly depressed.
The Craziest part? Whatever the situation may be in life, sadly families may fall out of touch. Through the research leading up to my CADASIL diagnosis, we found 8 family members ( suffered and/or suffering ) with this bizarre genetic disease, one of them being my sweet, loving Dad, who unknowingly passed the gene to me. There are over 60+ members in our growing family who have a 50/50 chance of having CADASIL. Since this disease is Autosomal-Dominant, there will ALWAYS be a 50/50 chance for it to pass, that percentage will never dwindle. The best part? My dad’s cousin, who only met me once when she was in high school and I was a few weeks old, was diagnosed with CADASIL at age 32, and is currently the president of the main CADASIL Association out there. THE FREAKING PRESIDENT! Meaning, she knows more than the majority of people, about this extremely rare disease that 90% of the population, including doctors, have never even heard of. Talk about bitter-sweet!
So, what are the chances? What are the chances that the day I sign up for a 6 week challenge, to prove something extremely important to myself, to change my life for the better, to test my strength, heart, and mind, was sought out to already be a truly life changing day for me? I knew I had to lift myself up, and fight through ANY challenge from that moment on, because I had been already fighting my entire life with out realizing. And well, damn-if this is the universe’s way of setting the precedent for my journey from this point on, I feel lucky. I feel lucky knowing two things for sure, that although I was born with a shitty rare disease, I was born a fighter, and I am strong.
In conclusion, if the only “medicine” to take, is the initiative to continue living the healthiest lifestyle I can, fueling my body with the proper nutrients and strength to compensate for what is lacking, then I hereby consider every single challenge, accepted. I feel a new sense of purpose, to push myself-to be the exception, to be the beacon of light for not only those effected, but for my family, friends and most importantly, my future. I will use my talents and knowledge as a designer to create purposeful design exposing proper awareness for this disease, as I truly believe in the next 10-20 years, we can and will make a huge difference. I will strive to help “Cure Cadasil,” get the recognition it needs and deserves. Some days are harder than others, but I will continue my journey, with no questions that I am exactly where I am supposed to be, regardless of all the overwhelming uncertainty.
I am honored to have been selected as the “Fit Life Athlete of the Month,” and proud to say I was submitted as the winner of my 6 week fitness challenge. I will continue eating clean and pushing myself as I have notice significant changes with my symptoms already. In return for my hard work and story, Fit Life Active will donate 10% of sales for the month of June to the “Cure Cadasil Foundation.” For all Fit Life Active purchase, please visit: www.fitlifeactive.com
For more information about CADASIL, if you feel inspired to donate directly, you can visit: http://www.cadasilassociation.org/
THE CREDITS: ( hehe )
• Combat Performance & Fitness, located in St. Petersburg, Florida, will forever be a part of my journey and gym of choice!
• Dr. Janice Maldonado, my final and amazing Neurologist at the USF Morsani MS Clinic.
• Nancy Maurer, my long lost second cousin, President of “Cure Cadasil Association,” in Plainsboro, NJ