We are sharing personal stories written by individuals impacted by Myasthenia Gravis. Today’s post is written by WWMG member, Val Allen.
Picture yourself a young teenager with no care in the world. Playing all the sports you want with no restrictions. Able to hang out with friends. Late summer nights. People looking at you like a normal person. Got the picture? Now picture a thirteen year old playing basketball when all of a sudden you’re hit with droopy eyes and double vision. Your world is suddenly turned upside down. What now?
That’s what happened to me. At thirteen I was playing basketball when all of a sudden my coach and coach’s wife noticed my eyes. It wasn’t gradual. It happened that night. Fortunately for me, mom got me in to see my doctor right away. His student asked so many questions that eventually led my doctor to three differentials. Diabetes. Cancer. Myasthenia Gravis. I was tested for both diabetes and cancer. Both came back negative. Less than a week later I was sent to an optometrist who happened to specialize in myasthenia gravis. A week on high doses of prednisone eased my symptoms and I was immediately referred to the Cleveland Clinic for further testing with suspicions of myasthenia gravis.
Now picture being a thirteen year old who is suddenly restricted. Not only by vision, but now health. How would you respond? How would you feel? Your life is turned upside down completely and you can’t go back.
I didn’t have time to think. I was very emotional and distraught. I didn’t know what to do. How to handle this. All I ever wanted to do was play basketball in high school. College. Maybe the WNBA if I was good enough.
Less than a month after my initial symptoms, I was officially diagnosed with Myasthenia Gravis. No cure. None. Pills and invasive procedures would be my life for the rest of my life just to ensure some kind of decent quality of life.
What is Myasthenia Gravis? It’s a neuromuscular disorder where the brain and muscles don’t communicate properly. Think of it like a car engine and spark plugs. It wants to start, but the spark plugs aren’t getting the right messages. The connection isn’t there. That’s what my body is doing. My brain sends signals to my muscles, but my muscles aren’t getting the messages. Therefore, I have developed weakened muscles. Fortunately it was in my face at the time of my initial symptoms. Double vision, droopy eyes, slurred speech and occasionally inability to swallow. But it’s not an easy fix. Just treatable.
I had to have a thymectomy with a full sternal cut. Now you’re probably wondering what a thymectomy is. Well, it’s when your thymus gland is removed thru your sternum. Like open heart surgery in my case. I was thirteen. There was talk that it would help get me into remission sooner, but that wasn’t the case for me. In fact, I got worse. Near crisis. I was in the hospital more than not during my first two years of high school. Not many people wanted to be friends with me. Who could blame them? I was restricted. In the hospital, I endured many invasive treatments, including one that almost killed me. I had to have plasmaphoresis. Plasmaphoresis is when your blood is removed and filtered of plasma and other blood wastes. One and a half years worth of this. I missed holidays. Birthdays. Family get togethers. Friends get togethers. I missed half of my high school career.
Not convinced that this is a real disease? My mom’s career was in jeopardy. She ended up leaving her job because she was with me the entire time (and other reasons). My brother and sister didn’t understand at the time. My dad didn’t know what was going on. He knew I was sick, but couldn’t or wouldn’t comprehend. This disease isn’t supposed to be fatal. People have died from this disease. It is very real. It’s devastating not only on the person who has it. But on their close family and friends as well.
I was fortunate enough to go into a drug induced remission by the age of 18. I was able to be medicine free by 21. I was medicine free for 5 years. Then stress triggered a relapse. I’m almost 27 and fighting again. I tried IVIG – which is infusion of immunoglobulin (donated by you!). But that didn’t work. I tried to maintain a healthy life. I worked ridiculous hours. I was unhappy. Stress and emotions triggered worsening symptoms. I moved. I started a new job. While I was very happy with my current life, my symptoms were progressing. I was not only having ocular and facial weakness, my speech because slurred, I couldn’t chew. I couldn’t swallow. I couldn’t breathe. My legs were weakening. My wrists were weakening. I needed my entire body for my job. I’m an athletic trainer. I was becoming weaker by the week. I started plasmaphoresis again.
This time I’m not alone. For the most part. I have awesome co-workers who are more than willing to help me. And offer help when I needed it. They caught on to my symptoms. They understood. My family has been incredible. My brother and sister learned more about the disease. My mom has done so much from afar to help. My dad is showing a little more concern than last time. But I’m doing this on my own. I have no clue how mom managed her work schedule, family, and me at the same time. I can barely manage with me and my cat!
I am getting better. My symptoms are slowly improving. I have flares every now and then. I’m understanding my limits. I’m learning not to be so stubborn. I’m learning to ask for help. I’m learning to say no.
Symptoms of Myasthenia Graivs: Droopy eyelids, double vision, slurred speech, inability to chew and swallow. Weakened muscles (voluntary muscles) such as neck, arms and legs. Shortness in breath, inability to breathe.
We need to be mindful of a myasthenic crisis that could lead to death. You’ll see and even hear that Myasthenia Gravis isn’t fatal. This isn’t true. There have been more and more deaths lately related to the disease. Which is why we need more awareness. More research. A better understanding of the disease.
Why is this so important to me, that you know about Myasthenia Gravis? It isn’t known. Most doctors have never heard of it. The doctors who have heard of it don’t know how to treat it. We need more information. More research. What can you do? Donate blood. I get 2.5 liters of albumin once a week. Albumin is a plasma byproduct donated by blood donors. Please donate blood and plasma. It saves our lives. It’s saved my life on more than one occasion. You can make the difference between life and death for us. Learn about Myasthenia Gravis at: http://www.myasthenia.org/ .
Donate to the MDA. Spread my story around.
Be the difference for us.
– Val Allen