Links

Contact us:

  • Call our Helpline 0412 038 142

Support: AXYS USA

AXYS USA aims to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives. genetic.org is an amazing website with many, many resources for all sex chromosome anomalies including:

  • Family information kits and brochures
  • Tools for genetic counsellors and other professionals
  • Webinars

Support: KSA UK

KSA offer support and information to all affected by, or having an interest in, Klinefelter’s Syndrome. Their website http://www.ksa-uk.net/ has lots of information:

  • Information for employers, teachers, social workers and medical professionals
  • Information on upcoming activities
  • Lots of downloadable resources

Books:

Australian Government support:

The Australian Government provides Carers’ payments and allowances when individuals require daily care and attention due to disability or medical condition. Many parents meet the eligibility criteria. More information on Carer Payment.

NDIS: Our Facebook site has a lot of discussion about applying for NDIS. Please email us to find out more.

Child development assessment:   States and territories have child development assessment units attached to major hospitals.  Search for ‘Child Development Assessment’ services in your location, or check out the links below as a starting point. Chat to your GP about how to access these services.

Education, learning, speech difficulties:

  • Learning needs for Klinefelter boys: An excellent article about what Klinefelter boys need to help them learn for teachers (and for parents to give to teachers): Adobe PDF Icon The Learning Needs of Children with KS
  • Talk to your GP to ensure you are maximising support for your child. For example, speech therapy sessions are available through the public (community) system, and funded by the Chronic Disease Management Program. There may be other programs in your area or other ways of accessing services that your GP will know about.
  • Learning Difficulties Australia: an association of professionals who assist students with learning difficulties through effective teaching practices based on scientific research (private funding required) https://www.ldaustralia.org/

Medical and health: finding help:

We often get asked about finding a local endocrinologist, psychologist or other health professional who “gets” Klinefelters. We can’t do that on a public website, but here are some tips for finding the right health professional:

  • Contact us to talk personally through what you need
  • Discuss your needs with your sympathetic GP. If your GP isn’t helpful, seek another GP and keep going until you find one who understands and is willing to explore, learn and support you in your journey
  • The Genetic Support Network Victoria (GSNV) is a vibrant and active organisation committed to promoting the interests and well-being of people affected by genetic conditions: http://www.gsnv.org.au/ 
  • Feeling very low? In a crisis, call Lifeline on 13 11 14

Don’t Google!

Information on Klinefelter / XXY on the Internet varies very considerably in quality and approach. We urge you to stick with reliable websites, particularly when your diagnosis is fresh and you may be feeling vulnerable.