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Congential anosmia is rare – only about 2% of all people without the ability to smell are born this way. When this is the case, they most often have no olfactory bulb or have damaged olfactory systems that cannot easily be repaired. They may appear to identify as being born without the ability to smell but may also have been affected by a head trauma or virus that occurred before they were old enough to be able to recognise what smell is as a sense.
The way to establish the cause of smell loss where there is no memory of ever having been able to smell is by referral to an ENT specialist by the GP or family doctor.
It isn’t uncommon for children to fail to recognise that they lack the ability to smell until they are about 7 years old. This may in part be due to the tendency for parents to be taking all responsibility for identifying risks and dangers that decrease as children get older and start doing things independently.
For example, this awareness may only become obvious as a child starts to cook for themselves but can’t smell it burning. Some young people can often feel embarrassed when speaking about their smell disorder and often pretend they can smell in order to avoid feeling excluded – such as joining in with the jokes when somebody breaks wind or going along with the wincing when a friend comes out of the bathroom. If you a parent or carer and would like further information and support, please contact us info@fifthsense.org.uk
In the autumn of 2021, reports from parents of teenagers and children began to recognise changes in their smell and taste. Parents were finding their children were losing their sense of smell entirely and it sometimes being followed by them going off foods and being unable to tolerate smells with descriptions of everyday household (and out of the home) smells smelling of rotten eggs, poo and chemicals. Working with the University of East Anglia, we supported a press release that was issued on 18th January 2021 to generate awareness and understanding of this condition. This can be read by clicking here.
These reports and these consequences have led to us creating a Parents Support Group and developing resources in collaboration with parents, young people and medical professionals. If you would like to join the Parents Support Group, please email: info@fifthsense.org.uk
Children and young people can lose their sense of smell from other causes, just like anyone else. A virus, such as the common cold can cause smell loss as can a head injury or allergy. For older children and young adults, not being able to smell themselves after a workout in the gym or when trying on perfumes and aftershaves, can cause anxiety and not being able to sit in the school dining hall because smells make them feel sick can lead to feeling excluded and isolated.
Finding ways to support them is a big part of the work we do. We are working with a number of young people to continually develop resources and information designed to help them to live with a smell or taste disorder as they grow up, leave home and beyond.
Anyone wanting to join the Parents Support Group and attend meetings via zoom to provide mutual support and share experiences in a safe and facilitated environment, you can register your interest by emailing us at info@fifthsense.org.uk
If you’re a young adult and would like further information and support, please contact us info@fifthsense.org.uk