I have brought you to this page to invite you to access further support and to tell you a bit about the voluntary work I do for the Klinefelter Syndrome community.
At the time of my Klinefelter Syndrome diagnosis around 2008 there wasn’t much patient support available. It took me a couple of years to connect with the UK Klinefelter Syndrome Association charity and for me to gradually understand our condition better. I subsequently learnt a great deal about Klinefelter Syndrome and how if affects patients, both though my own experience and by helping others.
I now connect with people in the KS community from all around the world. I set up and run a number of support networks which facilitate like-minded people with similar needs to connect and interact with their peers.
I have written a number of mini articles to help support all people affected by our condition including men with Klinefelter Syndrome, parents of Klinefelter Syndrome, girlfriends, wives and partners of Klinefelter Syndrome etc. I also became involved in a number of media articles, podcasts and even had a brief appearance on London TV news. All of the above can be accessed and viewed via this website.
Around 5 years ago I set up a number of private (Facebook call them ‘secret’) peer support groups to help improve and access support for everyone. All of the groups are well established and growing in size.
The peer support groups enable free and open chat amongst peers without the sometimes unhelpful and unwanted perspective of others; men can openly discuss personal aspects of having Klinefelter Syndrome, mums and dads can explore matters from the perspective of a parent and girlfriends and wives can discuss things from their viewpoint all, with their own peers.
There are other Facebook groups (some of which I admin in too) where mixed and varied audiences exist and more varied discussions with different angles and views can be explored.
The Facebook groups are not designed to replace those that you are already in, they work alongside them.
The ‘Men with Klinefelter Syndrome’ group began about 5 years ago with 1 member, now there are over 600 members, exclusively men with Klinefelter Syndrome. Varied discussions take place within the group with typically several new posts each week.
The parents group follows closely behind with a similar number of members including a number of expectant parents with prenatal diagnosis.
I would like to invite you to join whichever group is relevant to you.
If you would like to join please send me a friend request and a brief supporting message and I will be pleased to add you. There is no cost for you and no income for me, I dedicate my spare time to help others.
These are specific groups to connect like minded-people with similar needs.
I also facilitate a number of Facebook messenger groups to allow people in the same area to connect for example to discuss local healthcare provision or possibly arrange a social meet up. Many people find it useful to meet others.
The messenger groups include:
Please let me know if you would benefit from joining any of the above.
I am former Chair of the Trustees of the UK charity the Klinefelter’s Syndrome Association however the Facebook group is my own rather than belonging to the charity.
The KSA Charity now recognise me as a Klinefelter’s Syndrome Ambassador.
The video below was prepared to give medical professionals an overview of Klinefelter Syndrome and discusses some of the symptoms that are often overlooked.
Since 2019 I have volunteered as a ‘patient liaison’ with the London St Thomas hospital multi-disciplinary team Klinefelter Syndrome clinic.
The clinic has attracted local and national media interest including ITV news and The Guardian Newspaper. I was pleased to contribute to articles in both of the above.
In 2021 I was invited to submit an article to the American Urological Association which, if selected would have involved a trip to their annual international conference in Las Vegas to present my piece which described my voluntary work as a patient liaison and supporter. It explored care of my KS diagnosis, its shortcomings and how I worked with clinicians to improve patient and clinician engagement in Klinefelter Syndrome care with my involvement in the expert Klinefelter Syndrome multidisciplinary clinic with a true patient focus. I co-authored the article with representatives from the London Klinefelter Syndrome clinic who described me as ‘a strong advocate for better care for KS’ and recognised my observation that better personalised care was needed.
I was delighted when I received confirmation that my piece had been shortlisted and I had been invited to speak at the AUA Annual conference in September 2021.
It would have been an amazing opportunity to spread awareness of Klinefelter Syndrome and to have the opportunity to support to a wider global audience however unfortunately due to the pandemic travel simply was not possible. It would have also been an amazing opportunity stay at their chosen hotel The Venetian for the all-expenses paid trip however I am happy to be safe and well with respect for all those personally affected by the global health crisis.
So instead of travelling to America for the conference I produced the video above for use at the conference online.
In the video below another patient talks about his positive experience at the clinic.
For those with an interest in fertility this website and introductory video might be of interest.
My diagnosis of Klinefelter Syndrome and infertility came during fertility investigations when I was trying to start my own family in my mid 30’s.
Since then I have learned a great deal about fertility and Klinefelter Syndrome. I was really pleased to be asked to contribute to this fertility resource by a very well-respected Newcastle-based lead Consultant Urologist.
I have been pleased to contribute to a number of awareness-raising articles and podcasts. The Fertility Podcast is was recorded in a formal and structured style and may be of particular interest to parents and partners of Klinefelter Syndrome.
The Male Infertility Podcast was an informal chat between two men in which we explored the challenges of receiving an infertility diagnosis, my Klinefelter Syndrome journey and more.
The above audiences are suggestions, anyone can listen to and may relate to either podcast. The rest of my articles can be viewed here
I live in East Sussex, southern England. I look forward to welcoming you the Facebook peer support.
Below is a picture taken January 2022, out enjoying mountain biking in the East Sussex countryside.
