The NHS has recently revealed that new treatments being given for Spinal Muscular Atrophy (SMA) have increased the lifespans of babies born with the condition.
The decreasing mortality rate for those born with SMA is a positive indicator of where research can go in the future and gives hope to all those faced with SMA in their lives.
What is SMA?
Spinal Muscular Atrophy is the name given to a number of rare genetic conditions which affect the central nervous system, periphery nervous system, and voluntary nervous system.
Around 70 babies are born with SMA in the UK each year. It involves the progressive wasting away of muscle mass, resulting in those affected by it having weakened and reduced mobility.
An individual diagnosed with SMA may struggle with crawling, walking, arm, hand, head, and neck movement, as well as breathing and swallowing.
Therefore, stabilising somebody diagnosed with SMA is the most important aim, so that doctors can try and slow down the progression of the condition.
How are the new treatments helping?
Whilst there is unfortunately no cure for SMA yet, the NHS has been using three different drug treatments to help stabilise those diagnosed.
Previous studies undertaken in the US stated that fewer than 10 per cent of infants born with SMA made it to 20 months old without the need for permanent ventilation support.
However, new information from the NHS reports that now nearly three-quarters of children born with SMA in the UK are now over the age of two years old, with there also being a reduction in deaths of babies born with SMA.
These figures come courtesy of the three new drugs which the NHS have been using since 2019. With them being a genetic-based form of treatment, they help reduce the effect of the disease and can slow down the pace at which it develops in those born with SMA.
These treatments, alongside the data supporting their effectiveness, allow those who are affected by the condition to remain hopeful for the future, something which hasn’t been possible before.
Caring for somebody with SMA
Caring for a loved one with SMA can be mentally, emotionally, and physically taxing.
There is support available to both the carer and the patient, with Spinal Muscular Atrophy UK being a key place to look for help.
However, the help of professional carers can also relieve the pressure off family members and friends and provide some small respite.
Here at Synergy Complex Care, we are specially trained in meeting the individual needs of each of our clients and can provide medication and clinical support to help those with SMA to live a more independent life.
If you would like to find out more about how we can help somebody with SMA, please get in touch today.