The visual problems in USH2 tend to progress more slowly than in USH1. The higher frequencies are more affected than the lower ones. They communicate with speech and often lip read. The degree of hearing loss varies but most attend normal schools and benefit from hearing aids. Children with Usher's syndrome type 2 (USH2) are born with moderate-to-severe hearing impairment and normal balance.Night vision is affected first but it progresses rapidly until they are completely blind. At first, sight seems normal but they usually have some problems with vision by the time they are aged 10. Poor balance makes them slow to sit without support and they rarely learn to walk before the age of 18 months. Hearing aids offer little or no benefit and most communicate by sign language. Usher's syndrome type 1 (USH1) produces profound deafness from birth and there are severe problems with balance.Visit UsherKids Australia or Able Australia for a list of groups, organisations and professionals who can help manage USH or provide support.Usher's syndrome symptoms (presentation) You may find support groups and online patient communities helpful. Speech-language therapy programs can also support people with USH. Managing balance and coordination problems associated with USH may involve physiotherapy and occupational therapy programs. Managing hearing problems may involve cochlear implants, hearing aids, sign language (AUSLAN), adaptive technology and communication skills training. You can find further information and support at Vision Australia, Guide Dogs Australia and Retina Australia and UsherKids Australia. extra lighting for help in dark environments.educational support at school or university.using technology and applications (apps) on devices. using low vision aids such as magnifiers and closed-circuit televisions.regular eye checks, no matter the level of vision.You can look after and maximise vision for you or your child through: It is possible to manage the vision, hearing and balance problems that occur in USH. There is a lot of promising research into gene therapy and stem cell technology and upcoming clinical trials that are bringing hope to families. The treatment of USH is directed toward managing the vision, hearing and balance problems associated with USH.įor most inherited retinal diseases – including USH – currently there is no potential medicine, surgery or ability to cure vision loss. In Victoria, you can access specific genetic eye counselling through the Ocular Genetics Clinic at the Royal Victorian Eye and Ear Hospital or Genetic Eye Clinic at The Royal Children’s Hospital. If you live in another state, it is best to speak with your eye healthcare provider and local clinical genetic service. However, it doesn’t always identify the gene change because many are still being discovered. Genetic testing could help find out the exact gene change causing USH in you or your child. This involves having a small blood or saliva sample collected and sent to a laboratory. Sometimes doctors cannot be certain which gene change is causing USH just by looking into the eye. learn about any appropriate research studies or clinical trials.if you are thinking about starting or extending your family.provide support to help you and your family adjust to living with the condition.understand what USH could mean for you and your family.If you or your child are diagnosed with USH, it can be helpful to speak to a genetic counsellor. This may help you: Often you will be asked about your child’s general health and if anyone else in the family might have vision problems. This helps better understand their eye problem. To check your child’s eyes, an eye healthcare provider will do various eye tests, photographs and scans. These include: paediatricians (specialists in childhood conditions), otolaryngologists and audiologists (specialists in ears and hearing), ophthalmologists (eye specialists) and allied health professionals. Therefore, diagnosis may require the coordinated efforts of several medical professionals. Diagnosis of USH usually involves testing hearing, vision and balance.
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