Letter: A random and terrible disease
Your support helps us to tell the story
From reproductive rights to climate change to Big Tech, The Independent is on the ground when the story is developing. Whether it's investigating the financials of Elon Musk's pro-Trump PAC or producing our latest documentary, 'The A Word', which shines a light on the American women fighting for reproductive rights, we know how important it is to parse out the facts from the messaging.
At such a critical moment in US history, we need reporters on the ground. Your donation allows us to keep sending journalists to speak to both sides of the story.
The Independent is trusted by Americans across the entire political spectrum. And unlike many other quality news outlets, we choose not to lock Americans out of our reporting and analysis with paywalls. We believe quality journalism should be available to everyone, paid for by those who can afford it.
Your support makes all the difference.From Mrs Gillian MacCaughey
Sir: I read with interest your article "Veiled clues may solve the Elephant Man mystery" (2 September). However, I would like to clarify some of the points made in reference to the genetic condition known as neurofibromatosis.
The author writes:
one in 3,000 people suffer from it, mostly in a very mild form. It only manifests itself seriously in one in 3 million. These days, serious growths can often be removed surgically.
Available information does, indeed, suggest that one in 3,000 people are afflicted by this terrible disease but your article does those people an injustice to suggest that the majority are only affected with a very mild form. The most common complications associated with neurofibromatosis include skin tumours (which may be visible on the face, arms or legs); scoliosis, or curvature of the spine, which can affect appearance and mobility if severe; learning disabilities in children with normal intelligence but who have problems with reading, writing and the use of numbers; optic gliomas (tumours of the nerves which control vision); acoustic neuromas (tumours of the nerves affecting hearing) and congenital defects of bone which are seen most often in the skull and limbs. Thus, it is not uncommon for those afflicted to suffer deafness, blindness and from a loss of mobility. Furthermore, although many of the tumours can be surgically removed, because of their location (in sensitive areas of the brain and spine) surgery can lead to additional disfigurements and disabilities for sufferers already struggling to come to terms with this difficult disease.
About half of those affected with neurofibromatosis have inherited it from a parent, the other half are affected because of a spontaneous genetic mutation. Thus, it can appear in any family, even those with no previous history of the disease.
Yours faithfully,
Gillian McCaughey
Beeston, Nottinghamshire
Join our commenting forum
Join thought-provoking conversations, follow other Independent readers and see their replies
Comments