We are always trying to meet the needs of those in our community at the MGA, and one of those needs is offering a children’s support group. Children with MG tend to get overlooked. Not intentionally, but because the disease is more prevalent in older adults. Growing up with MG myself, I knew no one that had this disease, let alone another child, thus, having this group where kids can feel safe and accepted is incredibly important.
Anytime we start a program, we expect it to grow gradually. Although a tiny group so far, this group is filled with pretty resilient kiddos. This past support meeting we reviewed what myasthenia gravis actually means, how it affects the body, and furthermore, how to talk to your friends about your chronic illness.
Children are curious creatures. When something looks or feels “out of the norm,” many will start asking questions. Questions are a good thing though! It may not feel like it at the time, especially if a friend asks point blank, “What is wrong with your eye?” No one likes to be singled out for something that they cannot control. Having the right tools to approach these situations is key to ensuring a child with myasthenia gravis does not feel alone.
People are able to comprehend things better when there is something familiar they can compare it to. One of my favorite analogies is comparing MG to a battery. See below the analogy I used in our virtual support group meeting for kids with MG:
In this day in age, everyone, no matter what age, has some sort of device they use in their everyday life. Whether that is a computer, a cell phone, a tablet…we all interact with these things on a daily basis. But how is a battery like MG?
Think of our devices as a representation of our bodies. Our devices (bodies) need to be charged regularly in order for them to work efficiently and effectively. Similarly, humans, and moreover, those with MG, need to rest frequently and “recharge,” or sleep, to function.
But those with MG have somewhat of a faulty device. Somewhere along the line, an electrical signal or wire became faulty, and the battery (our energy) drains much faster compared to one in a healthy device.
What does one do with a faulty device? They charge it more and use it for a shorter period of time to conserve that battery. Additionally, a healthy device may be able to have tons of apps open and still work as it is supposed to. Yet, a faulty device can become overloaded by those apps. The device can get too hot or slow down, just like our bodies have to do when we overload ourselves with all that is required of us day after day. Sometimes our devices get so overloaded to the point where the battery is nearing it’s last bar, and we must choose how we want to use our device based on what is most important, kind of like how those with MG have to prioritize certain things over others because we do not have enough energy to do it all.
While we cannot trade our bodies in for new ones, we can feed off the energy of those who love us, the treatments that fuel us, and the positive outlook someone with MG can now expect.