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Ear, Nose and Throat

Ears

Hearing loss may occur due to hard impacted wax possibly caused by the narrowness of the ear canal and/or the underproduction of body fluids, leading to the earwax becoming very dry. Olive oil drops may help soften the wax, but sometimes this does not penetrate deep enough to prevent the wax becoming impacted, especially as the impaired functioning of the ear canal does not move the wax out of the ear in a normal fashion. Syringing can be painful for people affected by Ectodermal Dysplasia and may not be successful. As children may need the earwax removed regularly, possibly every 6 months or so, an alternative to syringing is the removal of wax by an ear specialist using a microscope.

Nasal Congestion

This is a common problem because nasal mucous glands may be absent or reduced in number leading to abnormal function of the linings of the nose, sinuses, eustachian tubes and throat. The mucous secretions may be much thicker than normal, forming a crusty mass. Nasal infections are common and are usually accompanied by a foul-smelling odour. Clearing this mucus out is essential to prevent odour and frequent nosebleeds. There are several things you can do to help: steam inhalations are good; older children can learn to wash out their noses, but many children don’t like doing this; saline water drops or spray every day is all that is needed to help keep their nose moist. If you cannot get saline water in a spray bottle from your Doctor, a Chemist can supply a spray bottle that is easy enough for a child to use without help and the Doctor can then prescribe Steripods, which are pods of saline water that can be used to refill the spray bottle or use as drops. For infants Minims, which are in fact saline water drops used for dry eyes, are wonderful for little noses.

It is possible to buy or have your Doctor prescribe nose drops, but vasoconstrictors e.g. ephedrine should not be used long term. However, the long-term use of saline water drops/spray is fine.

Nosebleeds

These appear to be a common occurrence for individuals with Ectodermal Dysplasia when the weather is hot, particularly at night. A nosebleed can be scary to have, or see, but try to stay calm. Most nosebleeds look much worse than they really are. Almost all nosebleeds can be treated at home. Place a cold compress (wet flannel) or an ice pack across the bridge of the nose, whilst at the same time placing a cold flannel on the back of the neck, as this will help slow the blood flow. Once the bleeding stops, don’t do anything that may cause it to start again, such as bending over or blowing your nose. Most nosebleeds occur in the front part of the nose and stop within a few minutes.  You may need to seek medical attention if a nosebleed lasts for more than 15-20 minutes.

Throat

Saliva may be reduced, causing problems with chewing, tasting and swallowing foods. It is advisable to avoid dry foods and always have a drink to hand when eating. A hoarse, raspy voice is common.

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