Tips and links for adults

Contact us:

  • Call our Helpline 0412 038 142 – we are staffed by volunteers so sometimes you will need to leave a message, but we will get back to you very quickly

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

Living with X&Y Conditions:

  • The definitive guide to our conditions is Living with Klinefelter Syndrome (47XXY), Trisomy X and 47 XYY: A Guide for Families and Individuals Affected by Extra X and Y Chromosomes:

    Australian Government support:

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

    NDIS: Our Facebook site has a lot of discussion about applying for NDIS, tips, ideas, guidance from people who’ve been through it. Please email us to find out more.

    • Talk to your GP to ensure you are maximising support for yourself. There may be other programs in your area or other ways of accessing services that your GP will know about.

    Medical and health: finding help:

    We often get asked about finding a local endocrinologist, psychologist or other health professional who “gets” Klinefelters and the X&Y conditions. 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 – many of the people on our Facebook group have been there before and can share details on which doctors they see, their fertility journey, their testosterone protocol and more

    The injection really shouldn’t be that painful. I have been on the jab for several years and can confirm from my own experience that: When the needle first comes into contact with the skin, the nurse says to me “a little scratch”. There is very little sensation of pain. I would describe it as a little prick and on a scale of 1 to 10 where one is very mild and 10 is very severe, the pain at the time of the injection is 1 on the scale.
    As well as warming the injection fluid in your hand before you go into the appointment, you should make sure that you have read the patient information leaflet that comes with the drug. An intramuscular injection should take 1 to 2 minutes to be injected. Whilst it would seem sensible to put your faith and trust in your health care provider, they do not all know the correct way to apply the drug.
    When I moved house I discovered that my former surgery was not giving it to me correctly. The nurses at my current surgery all know the correct method.
    So warm the oily liquid by carefully holding the container in the palm of the hand. I would recommend that the patient lies down face down on the bed for the injection.
    It is commonly discussed that one needle should be used to draw the liquid out of the container. This needle also pierces the lid and therefore should be changed because it blunts the needle before actually inserting the needle into the patient. It should take 1 to 2 minutes to apply the injection.
    I tend to feel mild pain after the injection for 1 to 4 days. I would liken the pain to a bruise, around 4 on my scale. Personally I avoid doing any strenuous activity for a couple of days after the jab, this includes not cycling or swimming.
    Only once in seven years have I had it injected in the wrong place, too low, and this was rather painful however that has only happened once. An experienced nurse will have the knowledge and expertise to know where to place the Jab best.
    The bottom line is to make sure that the instructions for application, whatever method is actually used (gel, Jab etc) is correct. It might be worth searching for whatever drug name is used online to check what the manufacturer suggests about application. Having spoken to a number of endocrinologists and patients, many were applying the Testogel incorrectly, they were rubbing it in too much when actually it should be applied in a thin layer and left to be absorbed
    . – Raj, AXYS Member

    • 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.
    • Andrology Australia the Centre for Male Reproductive Health in Australia have a special interest in KS for adults in terms of management and fertility advice
    • Feeling very low? In a crisis, call Lifeline on 13 11 14

    Don’t Google!

    Information on Klinefelter / XXY / XYY and related conditions 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.