Treatment Of Pendred Syndrome: The Options You Have And The Team Working With You

Learning about the treatments is not sufficient enough for you to take things on your own especially if you have Pendred syndrome. You need to know the team who will work with you as well.

Seeking treatment has always been one of the fears of any individual. Some lose hope easily that they don’t go for check-ups even once. This should not be the attitude especially if we are personally involved in someone’s condition. It is vital that aside from being knowledgeable to such genetic diseases like Pendred syndrome we are able to improve someone’s life. Treatments will most likely make your lifestyle better as it boosts self-esteem.

Pendred syndrome and your treatment team

Since Pendred syndrome is characterized by hearing loss, balance problems and goiter, we might as well need specialists for each problem. A treatment team is recommended for further management of the said disease. The treatment team includes the following

·         - Primary care physician

·         - Audiologist (to assess and treat hearing problems)

·         - Endocrinologist (to treat thyroid dysfunction)

·         - Clinical Geneticist (to have a clinical understanding of the syndrome)

·         - Genetic Counsellor (for support group purposes)

·         - Otolaryngologist

·         - Speech-Language Pathologist (helps an individual communicate better through learned skills or techniques)

Pendred syndrome treatments

Although the disease is incurable, we can always provide ways to help an individual cope with his condition. The treatment team mentioned above will help provide parents and their children informed choices to help them decide what treatment option is best for the individual with Pendred syndrome. Preparations for the progressive hearing loss and other complications are also provided by the treatment team.

Early treatment for children diagnosed with Pendred syndrome is recommended. The speech-language pathologist will teach the child skills that will help him communicate. Some of these skills include sign language or cued speech. Through the following treatments, a person with Pendred syndrome will have the confidence to do his routine tasks without being criticized.

·         Hearing aids. These are provided to help improve hearing difficulties.

·         Cochlear implant. This is an electronic device surgically inserted in the cochlea. Although it does not help restore nor create normal hearing, this implant helps the child develop a new way of understanding speech.

·         Thyroxine. Regular visits to an endocrinologist of individuals with Pendred syndrome who develop goiter will also be a great help. If thyroid hormone levels are decreased, thyroxine may be required.

Preventive measures for Pendred syndrome

Pendred syndrome patients are advised to take precautions against head injury to avoid progression of hearing loss. In order to avoid head injuries, contact sports such as basketball, football and volleyball to name a few should be avoided. These ball games often cause trauma to the head. Wear head protection when the activities you engage in will lead to possible head injury. Helmets when bicycling or driving motorcycles are advised. Avoid situations that lead to barotrauma. Barotrauma is an injury due to pressure owing to the differences between the atmospheric and intratympanic pressure. This may affect air travellers or scuba divers.

Learning these treatments and preventive measures to avoid progression of the disease is important. With health professionals who can help in treating patients with Pendred syndrome, people are provided with options on which treatment to take. It is still best to consult a physician before jumping to the treatment options provided above.