Myasthenia Gravis Awareness – Know The Myths, Don’t Spread Them
It’s Myasthenia Gravis Awareness Month and in the spirit of spreading awareness, we’d like to bring to your attention some hurtful myths about MG. We hope that by better understanding what myasthenia patients experience, you can develop a deeper sensitivity about their struggle and treat them with much-needed compassion.
MG Awareness Month was started by the Myasthenia Gravis Foundation of America 17 years ago and its main goal is to make those affected by the disease feel less alone in their struggle. We at FindMeCure believe that acknowledging a person’s hardship and adversity can make them feel seen for the fighter that they are. So, let’s honor MG patients by debunking those hurtful myths in our minds and hearts first.
“It’s a mind over matter kind of situation.”
Myasthenia gravis like any other autoimmune disease is invisible. When the communication between neurons and the muscles they should be sending signals to is disrupted, there are no visible signs that it’s happening – no scarring, no wounds or other visible changes. MG, however, is very real. It’s not ‘all in their head’. The person’s own immune system sends antibodies that block or destroy the receptors that carry out the communication between neurons and muscles – although not observable from the outside, this is a very real process that takes place and it cannot be controlled by the mind at will.
“But they were okay just a few days ago!”
MG like any other chronic disease can suddenly go into remission – a period of time when no symptoms are present. A person who has myasthenia gravis can experience improvement, they can feel better, be able to do everyday tasks without much effort… but just as suddenly the disease can manifest again. Unfortunately, there is no way to accurately predict when and for how long remission will occur. However, even when in remission, the patient still has MG, it just means the disease is not currently active.
“Well, they should exercise more! It says here that staying active can help.”
While yes, a lot of information out there insists on the benefits of exercising for people who live with MG, sometimes staying active is physically impossible. The severity of the disease is experienced differently by the different people who are affected. For some patients, MG is but a minor inconvenience, while for others it’s a crippling unpredictable condition. And the truth is, you can’t know whether their MG symptoms are mild or severe unless you spend a lot of time together. It goes without saying but, don’t make people with MG feel bad for not doing everything in their capacity to get better because sometimes exercise really is out of the question.
“It’s just muscle weakness.”
Myasthenia gravis can come with a lot of pain, unfortunately, as well as difficulty performing mundane tasks. It really is a more complex issue. MG can affect a person’s self-image, the quality of their life and it can also be life-threatening for the unlucky 15-20% of patients who experience a myasthenic crisis at some point in their lives.
“Is the disability parking pass really necessary?”
As we said earlier, MG symptoms can suddenly worsen – one day a person is able to drive their car, the next they can’t brush their teeth. There is no way to foresee when exactly the parking pass will be needed, so it’s not like they can just take off the sticker when they’re feeling better. There really is no need to get irritated – MG is a rare disease and nobody asked for it.
“Well, okay but with the right treatment…”
There are effective treatments for myasthenia gravis and new ones are being researched and developed as we speak. However, treatment is not as easy as popping a pill every day. Finding the right medication in the right dose can be a daunting process in and of itself. On top of that, every treatment available has side effects – some more severe than others. Some people with MG never experience a significant improvement in their symptoms, no matter the treatment. Others report side effects that make their lives miserable. You see, there are treatments… but they’re not all successful.
You can check out on FindMeCure what treatments are being developed right now if you’re curious to know. MG patients will soon have more treatment options and hopefully, one day a cure will be found.