Motor Neurone Disease (MND) is a rare, progressive neurodegenerative condition that causes muscle weakness and wasting due to the gradual loss of motor neurons in the brain and spinal cord. When learning of an MND diagnosis in the family, it’s common to wonder if it’s genetic and if your chances of developing the same condition are higher.
MND can sometimes be considered genetic. However, other times, only one person in a lineage is affected. Today, we’ll explore whether MND is more common in families, other possible causes, and risk factors.
What is Motor Neurone Disease?
Motor Neurone Disease affects the nerves known as motor neurons, which are found in the brain and spinal cord. When working effectively, motor neurons tell your muscles what to do. MND affects up to 5,000 adults in the UK at any one time, and it’s thought that we have a 1 in 300 risk of getting it in our lifetime. Anyone can develop MND, but it’s more likely to affect people over the age of 50.
The condition is progressive, and there’s currently no cure. Although symptoms will continue to progress over time, they can be managed to help achieve a good quality of life. Symptoms of MND include:
- Muscle aches, cramps and twitching
- Increased clumsiness, stumbling
- Weakness or changes in hands, arms, legs and voice
- Slurred speech, difficulty swallowing and chewing
- Extreme fatigue
- Muscle weakness, weight loss
- Changes in cognitive abilities and thought processes
- Respiratory problems
- Extreme emotional reactions to simple stimuli
It was originally thought that MND only affected the nerve cells that control the muscles enabling them to move, breathe and swallow. However, recent research has shown that up to 50 per cent of people with the condition can experience changes in cognition, language, behaviour and personality.
What is inherited MND?
According to the MND Association, inherited MND affects up to 1 in 10 people with MND, where there is a known family history of the disease. However, this doesn’t mean that simply because a family member has the condition, you’ll develop it too. There are other risk factors that usually need to be present before the condition materialises.
Inherited MND can occur when there’s a change in a gene that tells our bodies how to make or manage proteins. The differentiated gene can be passed down between generations, and this can increase the risk of developing MND. However, it does not mean that it will definitely develop in the carrier.
What is sporadic MND?
Sporadic MND refers to cases where there is no known family history of the condition in the individual exhibiting symptoms. It’s thought that differentiated genes will still play a role in the development of sporadic MND, but other risk factors often play a larger role.
Inherited and sporadic MND both exhibit the same symptoms and stages. The only difference is how they’re developed. Sporadic MND accounts for 90% of all cases, so it’s much more common to develop MND randomly than from a genetic mutation.
Genetic testing for MND patients
Genetic testing is a straightforward way to screen for mutations in four of the most common genes associated with MND in patients who have a close family member with the condition. These genes are known as C9orf72, SOD1, FUS and TARDBP. There are more than 20 other genes that have been associated with MND, but these are incredibly rare. Mutations in the C9orf72 gene are more common in individuals with a history of dementia.
Everyone has two copies of each gene. People carrying a fault in the gene leading to MND have a 50 per cent chance of passing it on to their children. However, the risk of someone carrying the faulty gene actually developing the condition may be less than 50 per cent in some cases. For this reason, genetic testing isn’t often recommended for family members of MND patients, as it can cause unnecessary worry.
MND patients might be offered genetic testing to determine whether their condition is inherited or sporadic. This isn’t necessary, and it’s a personal decision for each individual to make. Sometimes genetic testing causes more distress than it’s worth, so many patients choose not to move forward with it.
Potential causes of MND
Inherited MND makes up a very small percentage of all cases in the UK. Sporadic MND is considered to be caused by a number of factors and risks, but these are largely unknown. Researchers continue to search for answers, with studies being conducted on:
- Exposure to viruses
- Genetic factors
- Nerve growth factors
- Growth, repair and ageing of motor neurons
- Exposure to certain toxins and chemicals
- Inflammation and damage to neurons caused by an immune response
Lifestyle and environment
Several studies have indicated that several environmental factors may contribute to the development of MND. The findings have found possible links between MND and:
- Mechanical/ electrical trauma
- High levels of exercise
- Military service
- Exposure to agricultural chemicals
- Exposure to a variety of heavy metals
Evidence from relevant research has often conflicted with each other, making it very difficult to draw clear conclusions. Due to this, there’s no clear guidance on which lifestyle changes can influence the risk of developing MND. Professionals hope this will change in the future, as more research is completed.
Who’s at highest risk for developing MND?
There are several risk factors that may make certain individuals more at risk of developing MND than others. Identifying these factors and understanding how they interact helps healthcare professionals develop strategies to lower the risk of MND.
Potential risk factors include:
- Age and gender
Most people diagnosed with MND are aged between 50 and 70 years old, with normal ageing having an effect on the structure and function of motor neurons. Men are diagnosed with MND almost twice as often as women.
- Smoking
Healthcare professionals advise against smoking to reduce the risk of several health conditions, including MND. One study found that women who smoked showed a potentially higher risk than women who didn’t smoke. However, there wasn’t a significant difference between men who did and didn’t smoke.
- Lifestyle
Diet and exercise might also have an impact on our overall health and the risk of developing different diseases. Many healthcare professionals recommend leading a healthy, balanced life to minimise the risk of developing several ailments.
- Exercise
Multiple studies have explored the potential connection between strenuous exercise and MND, with some findings suggesting that high levels of intense exercise may contribute to the development of the condition, while others do not.
- Head trauma/ injury
A theory for the link between exercise and the development of MND is that people who play contact sports, such as rugby and football, are prone to head injuries. Traumatic brain injuries are a risk factor for several neurodegenerative disorders, including MND and dementia.
Why is it so difficult to find the causes of MND?
MND is an incredibly complex disease. Researchers believe that the condition may be active within the body for an extended period before physical symptoms appear. This means that people with MND may believe the trigger is something relevant to when they first started noticing symptoms, but this could be completely unrelated.
It’s also difficult to conduct accurate research on MND patients. To find the cause of a disease, professionals would have to expose participants to a specific factor while controlling all other aspects of their lives. This isn’t ethical or possible, so researchers must find alternative ways to study potential causes of the disease.
Motor Neurone Disease care with Trinity Homecare
At Trinity Homecare, we provide bespoke visiting and live-in care options to our clients, including individuals with MND. MND is a relatively rare neurological condition, making it difficult for some care agencies to offer accurate, effective care to clients. Trinity Homecare has been supporting people with MND to live well for over 25 years. We acknowledge and understand the challenging nature of this condition, both physically and mentally.
Our Motor Neurone Disease care involves:
- One-to-one support at home
- Completely bespoke live-in care that has been tailored to you
- Specialist care for a number of different circumstances
- Home carers carefully matched to your needs
- CQC rated ‘Outstanding’ live-in care services
We provide physical, practical and emotional support for people with MND, with a focus on fostering and maintaining independence for as long as possible. Our carers make meaningful decisions to ensure dignity and confidence are upheld throughout your care plan.
Talk to Our Team Today
If your loved one requires home care, chat with one of our friendly care team today. We offer a free, no-obligation enquiry and assessment service and are happy to offer information and advice to help you find the perfect home care solution.
Call us on 020 4572 5583 in confidence for a free, no-obligation quotation. If you are enquiring outside of our opening hours, please complete our online form and we will contact you the next business day.
