I had a very late diagnosis of being a 47XXY male – Having being told I had the genetic condition called Klinefelter’s Syndrome. I was aged 13 when I were told at first after a blood test and seeing the paediatric doctor at Treliske Hospital, the same time in my life when I should had started to enter puberty, I had learned to live with being constantly tired, I did not know any difference, to be fair I didn’t realise there was something a miss.
The doctor ran some tests, usually a full blood count.
So the Doctor ran some tests, and I had the genetic condition, one that affects 1/2000 men, parents are often told nowadays about their child having the condition before their child is born, that means research has come on a long way.
So treatment was needed.
Since I was diagnosed I have tried them all, with the best treatment Ive found so far is the Testogel Pump. Others I have tried were the intramuscular injections, patches and the 40.5mg sachets (the ones I am currently using at the moment) only as there seems to be a huge shortage of HRT treatments at the moment sadly.
I had a double mastectomy when I were aged 13, this meant 6 weeks off school, from the school bullys, I had developed small breast like lumps on my upper torso, so had them removed. – I wont post more about that here right now but if you’d like to know more you can always send me an email.
Living in the UK with KS (Kinefelters Syndrome) and the support thats greatly needed
The Coronavirus pandemic caused a lot of delays in healthcare and the NHS are struggling, that being said it would appear I have been dropped by the genetics team at Derriford as I have heard nothing from them since before the global pandemic, I have not seen the endocrinologist or any of the team for ages. Apparently the NHS are behind over a million appointments because of the 2020 / 2021 pandemic.
Can I help you?
Im sure there must be many of you who would like to know more, maybe you have the medical condition or you’re expecting a child that has the condition too, what I can do is very limited however if you’d like to send me an email message I will be happy to communicate and support you that way, my direct email is email@example.com
Thanks for taking the time to read all about me and my condition, if this post helps just one other its very much worth it.
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