Updated: Jun 25, 2022
In my efforts to raise awareness about Myotonic Dystrophy (DM) I am always told that when someone famous has it then there will be interest in it.
That’s pretty discouraging information because the way that DM1 affects the brain will most likely make it so that those with DM1 are never famous. At a recent Myotonic Dystrophy Foundation (MDF) Dr. Benjamin Gallais said that his research shows that DM1 causes social avoidance and lack of flexibility. These would interfere with the traits that would be important to gain fame and recognition.
That being said, I do know of one individual with DM that was famous, though I don’t think that his diagnosis was made public while he was alive. That person is Gilbert Gottfried. Gilbert was the voice of the parrot Lago in Disney’s Aladdin. He was also a comedian. I didn’t know that Gilbert had DM until it was announced with his death. According to the news, Gilbert had DM2 and died from heart complications related to his DM2. I have a few friends with DM2 and it complicates their lives a great deal, causing weak muscles and lots of fatigue and it definitely can affect their heart. DM2 individuals also typically have more pain than those with DM1. But, from my understanding DM2 doesn’t affect the cognition like DM1 does. And they claim that DM2 is the less severe form of Myotonic Dystrophy.
In the movie Jeremiah Johnson that came out in 1972 with Robert Redford there was a gentleman in a scene in the desert that had DM1. His name was Stefan Gierasch and he played the character of Del Gue. In this scene Del Gue is buried up to his neck and left in the desert to die.
The reason that I know about Stefan is because Chad used to date his daughter. Chad would love to be an actor so he was enamored with Stefan and Stefan’s wife, who was an acting coach. It was fun for Chad while he was dating their daughter.
All of my family LOVE to be on stage. They all love acting, singing, or ballet. Warren, our oldest, was in ballet from the time that he was 16. Because of the need for people to play character parts the rest of our family was involved in many of his performances. Also, Kent, Michael, Chad, Andrea, and myself were involved in community theater for quite a few years. They all loved the stage, except for Andrea and I. We were very self-conscious and only participated to be with the rest of the family. But the rest loved being in the spotlight. From my experience, many DM individuals love the spotlight. So the fact that this community doesn’t have famous people in it isn’t from lack of trying.
Due to the extreme fatigue the DM community doesn’t seem to make it very far in their efforts to be in the spotlight. Also, it’s very common for DM individuals to have weak breath support which makes being on stage difficult for the audience to hear them.
My family also has difficulty showing emotion on their face due to the muscle involvement. When acting for a camera, it seems that facial expression would be important. As a side note, there is a benefit from the poor facial muscle movement. Most DM individuals end up looking younger than their counterparts because of the poor movement of their facial muscles therefore creating less wrinkles. I chuckle because I have to pay for Botox in order to not have wrinkles on my face, where the rest of my family doesn’t have wrinkles because of the poor muscle movement in their face due to DM.
I appreciate all of your interest in this disease. There are a lot of efforts to get publicity for DM. There are needs for funding for research and also funding for the many needs of the individuals with this disease. The Wiggins family created a “Socks On” video challenge in 2020 to help raise funds. Check it out. It’s very fun what they have done. Here is the link for the “Socks on” challenge created by the Wiggins family. https://vimeo.com/459816963?fbclid=IwAR3b8rFqJSmuig2OW7BXj43FPuqzUt866a-c2npsAY5xFFmk02Xdr4lWyiU
When people make the comment that when someone famous has DM is when the disorder will get publicity it’s very clear that they don’t understand the disease and the way that it affects those with it.