90% Of MND cases are random..??
When you think about Motor Neurone Disease, you might assume that it runs in families or is linked to something specific..NOPE. For me one of the most surprising things about MND and what makes it so challenging is its unpredictability. Roughly 90% of cases occur completely at random, with no family history or clear trigger. Only 10% or so are familial / hereditary cases - meaning a parent has passed a gene down.
3 of my family members have died from M.N.D
My mum, her sister and her father all died from MND - i found this out after my mum had been diagnosed and we started to talk about it. After hearing and thinking about this I thought “this must be how pretty much all of the MND cases go, someone in their family has it and passes it along..” But when i found out that 90% OF CASES ARE RANDOM i could not believe it. I checked, rechecked and cross referenced every single MND website I possibly could because I thought maybe someone had just made a mistake but nope, 90%...
The Random Nature of MND
The actual term for this is called “Sporadic MND” which describes the 90% of cases that appear without warning. This means there’s NO genetic link or specific factor they can point to as the cause. For someone living with sporadic MND, the diagnosis often comes out of nowhere, leaving them and their loved ones searching for answers that simply don’t exist. It’s this randomness that makes the disease feel even more relentless.
You can’t predict it.
You can’t prevent it.
Once it strikes, there’s no way to stop it.
On top of this coming out of nowhere, the average life expectancy once you’re given this random diagnosis is roughly 800 days, making it a life changing event not only for the one diagnosed but everyone around them.
The Familial Connection
For the other 10% of cases, it’s heredity / familial, meaning it’s inherited through a genetic mutation meaning - if a parent carries this mutation, there’s a 50% chance it can be passed on to their child.
That’s me!
The look on peoples faces when I explain this to them is almost worse than my internal reaction when I found out there’s a 50/50 chance I could end up with MND. There is genetic testing available that I could get done which would confirm this for me but I haven’t done it, why?
To be honest I don’t REALLY see the point + it’s an inconvenience to actually go down and do the testing. The way I see it is like this,
I do have the gene
awesome there’s nothing I can do.
I don’t have the gene
awesome there’s nothing I can do.
A loop that I have implemented A LOT in my life since my mum's passing is shown below.
