Noob to the forum

Hi. I’ve been very recently diagnosed and just joined the forum. I’m 55 and medically retired from work in 2015. I also have Klinefelter syndrome (47 XXY).

  • A late reply but a reply nonetheless, to inform I too was diagnosed with Klinefelter syndrome to have since rejected the term in favour of simply XXY through the  desire to not consider my whole existence a syndrome or worse, a disorder, for life has been difficult enough with both ASD and XXY without the need to heap insult upon injury.

    As it was when I was diagnosed I took a keen interest in it, to in my autistic capacity learn all about it to enjoin with related support groups to find my way through my own mire of misunderstanding to have come to a place where it is I  stand in support of the newly diagnosed and bewildered with particular support for a very misunderstood and readily rejected aspect of it for the UK Klinefelter Syndrome Society to have requested I aid them in them in that respect.

    If you have not already, please learn of the KSA-UK to perhaps seek out their website, where if you do so, you will find targeted information galore to tell you all about what you are and far more than any doctor can for with this condition, oft one will find one has to educate, to self advocate for the sad matter of fact is that UK GP's have little understanding of it and what difficulties may be experienced.

  • Welcome! I am 46 and was diagnosed only last year. It is a process but I am learning more about myself and have decided to give myself less of a hard time. I am much more aware of my qualities now and not just my weaknesses. Yes I am a bit weird but so what! It makes me interesting. I wish you luck. 

  • Hi Nozzer

    Welcome aboard.

    I retired in 2015 too (I'm 52 now) - loving the freedom. Best thing that ever happened to me.

    What do you do to fill all your time?

  • It’s when you get cancer of the *. The ** unfortunately means it may of spread. *** - eek

  • I'm intrigued about what the '***' is that the forum censor has picked up on.

  • Hi nozzer!

    1. are you derived from the navy slang for novice?
    2. the urban slang word for nasal hair
    3. slang for a NOS canister (laughing gas)

    or....maybe derived from the anti sleep device the nozzer watch. Apparently “more effective than coffee, and doesn’t have side effects”. (www.nozzerwatch.com)

    plesantly intrigued.... 

  • Thanks. I could have done with this forum when I was having problems at work with social situations and misunderstanding what information people were seeking. I was an Information Officer before I retired. The research work was easy, but I often found enquirers wanted answers to questions they didn’t ask but my colleagues understood innately what they wanted. My employer didn’t regard invisible illnesses such as depression etc as genuine.

    On the Klinefelter syndrome matter, there is growing evidence that people with Klinefelter syndrome exhibit autistic traits. In KS there is defective executive brain function, hypogonadism and raised risk of autoimmune diseases, osteoporosis and certain cancers such as male *** cancer and germ cell cancers. The DWP and others, despite ample medical evidence to the contrary, seem to believe that people grow out of developmental disorders like KS and that it only causes sterility. That’s the least of our problems.

  • Hi Nozzer, and welcome.

    I'm 60 later this year, and was diagnosed in 2015.  I wasn't sure what Klinefelter Syndrome was and had to look it up.  Have you found that it's affected your health in any way?

    Anyway... I hope you like being here.  It's a very friendly and supportive community, with many kindred spirits I'm sure.

    All the best,

    Tom