I want to start out by saying I am well aware some folks out there have far worse conditions, and that I am very grateful for every day I get to spend on this earth. But with that out of the way being chronically ill is hard. Being YOUNG and chronically ill really sucks. The two biggest conditions I have are Neurofibromatosis Type 1 and Moyamoya. You have likely never heard of either one unless you know someone who is affected by them so let me break it down a little for you.
What are those bumps all over you?!
Neurofibromatosis type 1 (NF1) is a multisystem genetic disorder that is characterized by cutaneous findings, most notably café-au-lait spots and axillary freckling , by skeletal dysplasias, and by the growth of both benign and malignant nervous system tumors, most notably benign neurofibromas. The condition affects one in 3,000-4,000 people in the U.S. So basically the condition leads to other problems like scoliosis (which I have a slight case of), tumors on nerves (which have increased cancer risk), and other issues like motor and learning delays. Some cases like mine, are considered minor. My daughter, who turned 3 in November, has what is considered a mild case. It was discovered she has an optic glioma. That is a low grade tumor located on her optic nerve. It has been stable since it was found. When it was initially discovered she had to be sedated for a MRI every three months, thanks to the stability that now happens every 6 months. I have my scans once per year since I have a minor case. My biggest issue from my NF is the fibroma (tumor) in my ankle which has caused it to be severely swollen and may now need surgery. However, there are also severe cases, and either of us can progress at any time. There are cases where people’s tumors can grow to be quite large, and if they are not cancerous some doctors will not remove them as they ‘do not pose a threat’. Many people have the tumors on every inch of their skin, which leads to a large amount of us hiding in our houses and becoming depressed. People are not aware of the condition and will stare, whisper, and sometimes even make outright rude comments about the condition being contagious or disgusting.
You can't be that tired and run down! You are only 29!
My other condition is MoyaMoya, which in technical terms is "Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage. Moyamoya disease was first described in Japan and is found in individuals around the world; its incidence is higher in Asian countries than in Europe or North America. The disease primarily affects children but it can also occur in adults. In children, the first symptom of Moyamoya disease is often stroke, or recurrent transient ischemic attacks (TIA, commonly referred to as “mini-strokes”), frequently accompanied by muscular weakness or paralysis affecting one side of the body. Adults may also experience these symptoms that arise from blocked arteries, but more often experience a hemorrhagic stroke due to bleeding into the brain. "
This is known to affect 1 in approximately 1 million people. This condition is significantly less known. Let me give you some back story here about how mine was discovered. In October I went through something personal that caused me a high level of stress. Around that time I started to get dizzy, and it was nearly every day. I figured it was just stress. The dizziness continued into January but by that time I was attributing it to the seasonal change. That excuse carried me through to the spring. While I was dizzy nearly every day most days it was just a minor background feelings and not too overwhelming. I had some days that were worse than others, but I honestly did not think anything of it. Mid May is when my daughter’s tumor was found, so when the dizziness intensified again, I figured it was stress. But then one day while I was at work my mind and my vision both tunneled. My speech was difficult and I could not focus on anything. What was in front of me looked far away and my peripheral vision was black. I obviously could not attribute T AT to stress and rushed over to the ER. I was processed through under a stroke alert and taken back right away. Now at this point I still thought “Maybe I’m just really dehydrated” and wasn’t too alarmed yet. The word Moyamoya was one I never saw so it of course did not cross my mind. I was given a CT scan and went back to the ER room I was in for treatment. My mom picked up my daughter from her daycare and came up to the hospital to keep me company figuring I could just take my daughter home with me when I was discharged. Around 11 pm the docs came in to tell me that I had to get a few more tests and the machines were not open but that I would be staying at least the night. So with that my mom grabbed my house key so she could get clothes and pajamas for my daughter and took off for the night. It was around maybe 2 am when I got my 3 HOUR LONG MRI and then was finally put into a regular room a few floors up. I spent three days in the hospital and during my stay I had additional tests like the bubble test (used for heart problems), echocardiograms, every kind of blood work test out there, and an ultrasound of my leg with the tumor ankle.
On the morning of the third day a whole freaking slew of people walked into my room and looked like they had seen a ghost. The leader of the crew was the hospital neurologist who told me I have moyamoya. Of course it had to be explained to me and I felt my heart drop into my stomach. No cure. Surgery. Brain Bypass. Stroke. Death. That last one scared me. You see, I am a single parent. My mom will take the out of town trips with me for my daughter’s scans and oncology appointments, but I am the only active and involved parent. So death and stroke or anything of the sort is not something I could accept. I refused to. Over the next few weeks I had to get a MRA, an Angiogram, and blood work done then went back in to meet with the neurologist who delivered the news to me. After looking over my scans and test results he advised that we would follow a ‘wait and see’ plan, and that being dizzy was my new normal. He did say that if it got worse or I showed any FAST (Facial drooping, Arm weakness, Speech issues, Time to call 911) to come in. Being told that dizzy would be normal for me did not seem right, after some research and finding a support group on Facebook, I decided to reach out to Dr Gary Steinberg at Stanford in Palo Alto California. He specialized in Moyamoya and is one of the most well-known surgeons in the world for the condition.
A few days after I sent my scans there his team called me to tell me I needed surgery ASAP and to go off of all the blood thinners and medication my home doctor put me on. My first appointment was set for just over 2 weeks later and surgery the week after that. To paint a clearer picture, I live in PA, and I am a single mom. So being told I needed lifesaving surgery across the country and that I needed to get there in 2 weeks sent me into a panic. By the grace of God I came across a charity group called Angel Flight. They paid for my mom and I to get there and back for the surgery and my dad watched my daughter. Let me just tell you, saying goodbye to your father and your daughter, not knowing if you would be coming home again……that shit is HARD. I think I cried most of the 3 hour drive to Baltimore where our flight was leaving from. Fast forward to California, we landed in San Francisco on a Wednesday and took an uber the 45 minutes to Palo Alto where the hospital had us set up in an income based housing apartment for patients of the hospital. It was nicer than I expected and took some stress away. We went out that night to get groceries for the week and then came back to settle in. Thursday and Friday I had pre surgery scans and a totally mind numbing mental baseline test that lasted entirely too long. Tuesday was the big day, and surgery went well. They used a donor artery from the wall of my skull and moved that over into the area of my brain with the blocked artery. My surgery was a direct bypass so they actually went in and stitched it into the area of my brain that was deprived. Recovery wasn’t terrible and I was out of the hospital by Friday. I had some follow up appointments the following Tuesday and was on a plane home Wednesday morning. Now it’s just yearly follow up MRIs and angiograms at home and every few years I have to go back to Palo Alto. The surgeon there told me I would have had a massive stroke by Christmas of that year had I not made the decision to reach out to him and get out there for my surgery.
Many people in my life seem to think that my surgery ‘healed me’ but that is not the case. Its more like a Band-Aid. I still have to be vigilant about my hydration, I can’t wear things that are restrictive to the area where my plate is, I have to be careful not to overheat, my alcohol has to be limited, and some other things I have to keep in mind. Overall the fact that I am ALIVE outweighs ALL of that but people don’t get it. I am on aspirin every day, and when I do need to go in because I feel off I almost always have to explain what moyamoya is to the doctor in the ER. People who don’t know me well think I am milking it or being dramatic if I have an off day, or my favorite I am told that I am “too young to be so sick”.
Post Surgery
BUT WAIT THERE'S MORE
In addition to the two 'big ones' I have Hashimoto's disease which is an autoimmune condition of the thyroid. The side effects of that are constipation, depression, enlarged thyroid, fatigue, joint stiffness, muscle weakness, puffy eyes, sensitivity to cold, slow heart rate, swelling in extremities, or weight gain almost of all of which I face. I have a PFO , or small hole in my heart. And was recently , finally, diagnosed with anxiety.
In short I have a bunch of conditions that make me an exhausted basket case. I constantly am told that I am milking it or some other BS because I am 'too young' to be that sick . Maybe you clicked this article because you can relate, maybe you clicked it because you know someone young and ill, or maybe it was pure curiosity. But maybe you are someone who thinks young folks cant POSSIBLY be sick if they are well enough to work and drive on their own, and if you are I hope maybe this opened your eyes a little more.
Try not to judge a book by its cover, there are so so many more 'invisible' conditions that can affect people of all ages.
Also this is my first Buzzfeed post, be nice!! hahah If you want to follow my daughters journey you can go to www.facebook.com/mackenziesarmy or instagram.com/mommy_of_a_warrior
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