For Adele Farquhar, even basic physical activities are a daily struggle.
At three years old, she was diagnosed with Spinal Muscular Atrophy (SMA), a genetic condition that causes muscle wastage and weakness.
Now, at the age of 50, she’s in a wheelchair, and relies on assistants to “be her arms and legs”, otherwise, she says, “I can’t live an independent life”.
SMA is a serious condition that worsens over time; and while there are no cures, there are several new treatments to help manage the symptoms.
But knowledge of those treatments, and the support available to SMA sufferers on the NHS, is not well known.
According to the charity SMA UK, approximately one-third of adults living with Spinal Muscular Atrophy are missing out on important support and treatment, because they’re not aware of what’s available to them.
Adele says she only heard about the medication she’s now on by chance; because her niece, who works in a hospital, mentioned it to her.
She says she feels “very let down by the system”, adding that “there are a lot of medical professionals who don’t know about SMA; how it affects you, what you need, and what will make your life easier”.
SMA UK thinks this lack of treatment access is due to a range of factors; from regional disparities, cultural and economic barriers, and gaps created by the transition from paediatric to adult care.
But Channa Hewamadduma, neurology consultant and service lead at Sheffield Teaching Hospital, explains that care has changed a lot since Adele was first diagnosed nearly five decades ago.
“Many adult SMA patients when they were diagnosed several years ago perhaps were told that there is no treatment available, and you just need to get on with your life… but the landscape…
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This notice was published: 2023-10-27 15:22:00
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