baby love

Family Time – The Next Chapter

You will be reading this as Monika and I are about to embark on the next chapter of our life together. I’ll be thinking about this blog post and also the week ahead. I’ll also be thinking about your reactions and thoughts towards the contents of this post and hoping you can share the sentiment. I realise that I have not written many words for a while. I’ve been focusing on the next chapter in my life – family. You may recall that I proposed to Monika and she accepted. I’m pleased to tell you that we got married on July 5th 2014.

sheridans wedding
The usual stages of a solid relationship is live together for a bit, make sure you are comfortable with each other, make sure the spark is always present and prepare for a long lasting future together. That usually involves marriage, getting a house and starting a family – there is no order that you do this in and there is not a set way to approach this.

Having a family is something that I have always dreamed of. It’s a cruel world when you are denied the opportunity to start it the easy way with someone you love. Over the past year Monika and I have been investigating what our options are. As you may or may not know I am infertile due to Klinefelters Syndrome. I was born with an extra X chromosome. A simple way of explaining why I’m infertile is that some things are switched on and other things are switched off. The ability to father a child by normal means is switched off as is the ability to produce normal levels of Testosterone – something that I receive treatment for.

The first option we explored was the process to surgically retrieve sperm from the testes. However upon finding out that after taking testosterone supplements reduces the chances of finding sperm we decided this was not an option. We were given a chance of 20% at a cost of about £5,000 + storage costs. Financial implications aside – and considering everything I’ve been through till this point – it would destroy me, knowing that there is nothing to rescue. It was not an easy decision to come to and I suffered many sleepless nights thinking about the process and the implications of it.

The second and final option we considered was to go down the route of donor sperm. You would think it’s a a relatively straightforward process getting donor sperm. Trust me, it’s not at all. Once we had made the decision that this is what we wanted to do. Monika contacted her G.P. and told him of our complications to start a family – he wrote a referral letter. About 4-weeks later Monika received an appointment to attend St. Barts (London) fertility clinic.

St Barts Fertility Clinic London
When we attended the clinic, we were greeted by a really pleasant (sarcasm) receptionist. Who instructed us both to fill out consent forms – basically protecting all parties involved. I initially thought this was weird as we had just come through the door, walking into the unknown – a cold sterile environment with a moody receptionist and your typical NHS drinks machine buzzing away in the background. We filled in the forms and waited about 20 minutes before a nurse came and took Monika off to get measured and weighed. Another 20 minutes passed and we were ushered into a room by a doctor.

Cold Chairs

The room was at the end of the corridor, it felt like a box room and in the corner was a window and beneath that was a chair with ultrasound equipment – the room was cold and it wasn’t just our nerves. The whole place had that negative vibe about it. The doctor was clearly new and not familiar with her surroundings. Fumbling around on the desk gathering scraps of paper and leaflets. The doctor turned and started to speak to Monika and say that her G.P had referred here to the clinic on the grounds of not being able to start a family by natural means.

The doctor asked if she knew why we had been referred to that particular clinic. I piped up and said it is down to the fact that I’m infertile due to Klinefelters Syndrome. The doctor grunted (very odd) and mentioned that there was no mention of that on the referral letter. I thought in the back of my mind ‘here we go again’. She began to question me about when I found out and under what circumstances. I felt a bit weird talking about it all and I was speaking with a lump in my throat – it’s not a time in my life I want to remember. Monika reached out and comforted me and then spoke to the doctor about the next steps as I was unable to articulate my thoughts. The doctor said that we would both have to have blood tests and I would have to give a sperm sample. Monika also had to book in for a scan to make sure she was okay inside. The doctor then said because she had no record of the Klinefelters Syndrome we would have to start again. I suddenly felt weird, starting again – as in verification of me having Klinefelters Syndrome? Surely they can just contact the consultant at Guildford and swap notes!

They asked me if I could get the notes as they did not have it available from the G.P,  but then why would they as it was Monika that had been referred – patient confidentiality and all that jazz. The doctor was still insistent that I do a sperm test and a blood test. I questioned this – if we were going to go down the sperm donor route I would not be involved in the process physically. The doctor then started to go on about surgical sperm retrieval and said that there might still be a chance for us. I mentioned to her that we had considered it and it wasn’t something we wanted to go for. The doctor didn’t seem to take no for an answer and carried on insisting I have the tests. I felt really pissed off by her approach towards it all and I agreed to it just so she would stop talking. We received our slips for the blood and then we had to book an appointment for Monika’s scan. Leaving the place we felt excited but deep down I knew it wasn’t going to be an easy process and we would have to join the queue.

Blood Tests

Monika had the blood tests done as soon as she could and the service was not the best. Several attempts and a bloody arm later it was a process that Monika did not want to repeat for a while. I wrote a letter to my consultant in Guildford explaining the situation and then followed up with his secretary over the phone. Apparently they had sent a letter to St. Barts with all my details and they advised me not to have the tests as all the information the doctor needed was there.

A month or two later Monika received an appointment to visit the hospital clinic and have an internal scan. I went along to support Monika. We met a lovely doctor who seemed very knowledgeable about our situation which put us both at ease. I don’t think the procedure was very pleasant for Monika – but it seemed to be over in about 20 minutes. I was going to make a joke about the way the doctor applied the condom to the probe but that would have been inappropriate so I refrained and told Monika afterwards. We both had a giggle. The doctor then explained the next steps and we were told we would get a follow up appointment to speak to the doctor about treatment options. Monika also asked the doctor if everything was okay – and the doctor put her mind at ease with no noticeable issues.

Two months had passed by and we had not heard anything from the doctor. Monika decided to follow up and then an appointment was issued. This time I wasn’t able to attend due to attending a business meeting. On arrival at the clinic Monika was met by her favourite receptionist and told to wait in the waiting room. There is just something about the receptionist that rubs Monika up the wrong way. Monika was ushered into the consulting room by a different doctor. In this clinic you never get to see the same doctor which I find odd as there is no consistency between appointments and you have to repeat all your details over and over. Had I have been at the next appointment I think I would have lost my shit as what follows is an appalling situation.

Waiting Room

Apparently the doctor that we had seen the last time had left the clinic and between our appointments and Monika’s tests nothing had been done. That’s right, absolutely nothing! Monika had to spend the next 30 minutes or so explaining the situation to the new doctor. The doctor was adamant that I would need to have certain tests performed on me as they did not have the letter from the my consultant to back up what Monika had told them. Thinking about it my consultant probably referenced my name in his letter. All the consultations are in Monika’s name – so no doubt the letter is sitting in a filling tray addressed to the doctor that left.

Monika walked away from the appointment feeling a bit sad as it felt like we were a few months off from where we wanted to be in the process. Monika had to repeat her tests, thankfully they still had record of the internal scan. I had to make an appointment for my blood to be taken and also to give a sample of the nothing that comes out. As they wanted to check that my consultant had not missed anything – ridiculous and I refused to get these tests done. Going down the donor sperm route there’s no need in my mind to have these tests done.

Barts Health NHS Trust

Another month went by and we received a letter from St. Barts asking us to visit a counselor. The doctors apparently need to make sure that as a couple you really want to have a child and you are mentally prepared for the task ahead. We were told about the various options open to us – sperm retrieval being something that was still talked about even though we had made our minds up on donor sperm. The counselor then carried on to talk about when to tell the child that they were made from an anonymous sperm donor – although it’s not completely anonymous as your child at the age of 18 is legally entitled to contact the donor. Something I was aware of,  but also something that we had not thought about too much. When you are sat in a room with your wife to be – this stuff really hits you both emotionally hard as it wasn’t something we had considered.

The counselor then began to tell us about books you can get to explain to the child from an early age where they came from. Apparently some parents to be – don’t tell the child due to religious beliefs. We discussed at length with the counselor that we would aim to talk to the child as soon as they were able to understand the situation.

We then discussed all of the different treatment options available to us. For example they can put Monika on certain medication that will force the cycle. We needed to be made aware of the complications of this medication and also the impact it would have on our lives. The session lasted for just over an hour and I could not help thinking that we were on trial – and we needed her sign off before we were allowed to progress to the next stage.

The next stage was an appointment with the nursing team however it was a right mess trying to organise an appointment. We were copied into an email from the counselor to the fertility nurses that we were ready to progress. The counselor put in her email that we should be able to just get on and do it. After lots of emails to an unresponsive nursing team we finally made contact and two months later an appointment came through the door. This time it wasn’t with the nurse but with another consultant who has the overall decision if you can progress with the assisted pregnancy and also what treatment you get.

We found ourselves having to explain about the Klinefelters Syndrome and how we got to where we are. It all seems like it’s taken a year to finally start seeing some action from St. Barts. During that appointment we told the consultant about the previous appointments and about the tests the other doctor wanted me to have. We spoke about the % chances and how we got to our decision on using donor sperm. The consultant then decided he was not going to put Monika on any medication and to attempt a natural insemination process. The consultant also said that I did not need to do the tests (I was relieved!) however Monika would need to do a few more blood ones to make sure her hormones are doing what they should be.

Baby SheridanThen we spoke about costs and this is what we get upset about the most as it’s not cheap. For example if we went hunting for sperm, that operation would be approximately £5k plus storage fees if something was found. On top of that, would be the cost of cycles of ICSI. On the NHS we are covered up to 2 cycles including drugs and follow-up appointments. After that we are on our own! We were relieved to hear that for the natural process we just have to pay for the sperm and then wait for the magic to happen. Although we are less likely to have twins. I guess if Monika enjoys the pregnancy we can make sure we buy enough sperm for a second child from the same donor.

Having just got married at this stage we were getting excited as the consultant had signed off the treatment and stated we could start as soon as Monika’s next period. After we left it started to feel awesome that we were ready to start the next chapter. The consultant suggested we go over to the main clinic to make an appointment with the nurses to kick off the process. We walked over to the clinic and we were greeted by non other than the moody receptionist. We explained what the consultant had said and for us to make the next available appointment. We were in August and she said the next appointment would be end of October! Both of our hearts sunk to the ground. More waiting around! Monika started to cry and I got upset as well. The receptionist was very unsympathetic towards us which made us feel really great! We made the appointment for October and stormed out of the clinic – gutted!

As we walked out we exchanged frustrations with the whole process – it’s been a chore to get to where we are today and it felt like we were being made to wait even longer. We had even done calculations that if we started in September we could have a summer baby. We have even chosen names as we’ve had such a long time to think about it all. I’ll keep that under wraps for now.

I was inspired to write this post as we received a letter recently that our appointment to start had been brought forward to September. As you can imagine we are really excited again. I’m writing this post through crazy turbulence on a flight back from a business trip. It feels good to be able to share with you our plans for the future and also highlight the process we have had to go through to start a family. A part of me wishes we were able to have a family through normal means but then when I think about it, we are going to make ace parents! This process has made us stronger, closer and more appreciative of the building blocks of life. As you are reading this post we are probably in the clinic discussing the treatment with the nurses and choosing our donor. Watch this space, baby Sheridan is coming to a world near you soon!

 

Frank

Frank!

I realise I haven’t written anything for some time largely due to writers block – I’ve scribbled down some notes here and there but nothing that would merit a full post until now.

What follows is a frank, open and honest account of a recent event in my life. An event that I am utterly ashamed of, something that only people extremely close to me know of.

You might be wondering why I have decided to share this with the world – I’m sharing in the hope that it will help people avoid these events in their own lives. It will give you an opportunity to help me raise awareness and hope that together we can fix a system that in my opinion is failing.

It all started on Friday 11th April 2014 in the early morning – apparently I was sleep walking around the house. I often sleep walk – usually after a night on the town and in the morning I’m not where I went to sleep. I’m either in another room, in the bathroom on the floor, outside somewhere or naked in a hotel corridor. Monika woke me up to ask what I was doing and this is where the madness began. From that moment on I had no idea what I was doing and now a few weeks on I only see flash backs of a terrible ordeal.

Whatever I was doing or whatever Monika said to me triggered a rage deep within, a rage that I was unable to mentally & physically control. I severely lost it! I rampaged around the house shouting and screaming like a man possessed. I trashed the clothes horse in the hallway, I ripped the light from the wall, I kicked a massive hole in the side of the bookcase, I threw a chair out on the balcony, I smashed a dining room chair to pieces, I smashed several storage boxes to pieces, I threw clothes, I threw objects that were lying around the house and then… I tried to end my life.

I’ve suffered from testosterone-fuelled rages before and I’ve even written about them on this blog – this one was different – this time I was not in control!

I’m not sure if I had properly woken up or if I was still in a state of sleep as I was acting confused and saying (shouting) the most ridiculous things to Monika. I have read online about people with Klinefelter’s Syndrome suffering from parasomnia, which is the medical word for sleep disorders.

I’m only sat here today because of the valiant efforts of Monika to keep me alive during my uncontrollable rage. They say when your life or the life of someone that you really care for is in danger that often a super-human power / guardian angel can take over and help out in the most unlikely situations especially when it’s not your time to go. Monika managed to stop me from taking a knife to myself in the kitchen and then subsequently when I had failed she stopped me from jumping off our balcony (6th floor) to the ground.

For the past 12 or so days I have not slept properly since it happened – I keep having flash backs and when I do dream I hear her crying for help.

I’m not sure how long Monika was crying out for before our neighbours got involved. They must have heard the shouting from me & the screaming from Monika and called to see if we were okay.

Fortunately our neighbours have a key to our flat and were able to let themselves in. They were obviously concerned and called 999 – I was on the floor in an incoherent state and Monika was physically stopping me from going anywhere.

I have no recollection of the time that had gone by – I was apparently still raging, frustrated and desperately trying to end my life.

I have vague pictures in my head of paramedics being present accompanied by police officers. Upon arrival they were trying to make contact with me and suspected that I had taken drugs the night before and this was a bad reaction to the drugs.

For the record I do not take drugs other than what has been prescribed to me for the Klinefelter’s Syndrome. I don’t smoke and I have the occasional drink – the night before I was at an awards ceremony with work and I admit I had too much to drink.

The paramedics and police were unable to make contact with me at the flat and relieved Monika so that they could ask her what happened. Apparently at this time I managed to break free and had another attempt to get to the balcony. This time it was met with brute force and I was immediately handcuffed and put into a restraint by the police. I fought with them for about 5 minutes before they were able to get me under control it took a few of them to hold me down – I was apparently still raging at this time.

They made a decision to take me to hospital and the police sectioned me under 136 the mental health act due to my state of mind with the intention of getting me urgent medical care. I was not being arrested, as I had not committed any crime. Even though I did attack the police officers and due to the fact that clearly I was not my usual self they decided at their discretion not to press charges. I have no memory of them being there, what I said to them, how I acted, leaving the flat kicking, screaming, shouting and raging still.

The police decided that the ambulance take me to the nearby Homerton Hospital that has a special ‘136’ unit to deal with mental health issues. Upon arrival they rejected me as a patient and referred me to the standard A&E where a member of their staff would assess me.

I remember receiving a cup of water through a straw and having people prod me and ask questions in the hospital. I remember a doctor asking me if I was going to behave as I was handcuffed to the bed semi-naked. The doctor wanted to check the injuries that I had that were due to me being removed by force from my home earlier. I remember him asking me if I had taken any drugs as they could see a crystalline substance around my nose. It was probably crusty snot & tears following my earlier outburst.

The below is my discharge form from A&E – I have removed names to protect those who were involved apart from my own.

Homerton Hospital

After about an hour I came around and slowly started to realise what I had done. I have never felt so ashamed in all my life – not remembering what happened made it worse and even now the flash backs haunt me. My initial question to a teary eyed Monika was did I hurt her in anyway and thankfully I did not. The police officers then visited me as they were not able to leave the hospital until the consultant from the 136 unit had assessed me. They started to fill me in on my actions and I felt a strong feeling of remorse and I was very apologetic towards them. I thanked them for their actions and decisions – it could have been a lot worse for me – I think they did want me to get help and not intentionally be heavy handed with me.

Moments later the consultant came to visit me – he told me that he wanted to spend 30 minutes talking to me on my own and then some time to talk to Monika and me and then talk to the police.

For the first time since the diagnosis of the Klinefelter’s Syndrome I’m actually (spookily) talking to someone who is a) aware of it & b) understands the how a person with it can behave in a way similar to the events that took place.

These are some of the things we talked about and it felt good to talk;

  • My childhood & my family
  • My father passing away – his cancer and how it’s apparent that I’m not quite over it yet.
  • Previous relationships that ended badly.
  • Drugs – I reaffirmed that I am not into that scene
  • Alcohol – there was a time following my initial diagnosis I turned to alcohol to solve my problems – not a good idea
  • Sleep disorders
  • The system for identifying Klinefelters Syndrome
  • Klinefelter’s Syndrome in general > support, medication and lack of information
  • Infertility
  • Monika

The consultant came to the conclusion that various things in my life had been building up and that this outburst was related to that. Clearly mixing a large volume of alcohol and testosterone played a part & he was concerned that my medication should be closely monitored and regulated during the year. We discussed my sleepwalking and he agreed there is an issue to be addressed and he would refer me to a specialised sleep disorder clinic. In terms of my general state of mind he did not seem concerned at all – which is a positive.

We spoke at length about the Klinefelter’s Syndrome and how I feel about it – I mentioned to him about my blog and I suspect that he will be reading this post, no doubt he will add comments if I have missed anything out.

We then spoke at length about infertility – out of all the symptoms related to the syndrome this is the hardest one of all for me to bare. I get bogged down when I see friends get excited about their new family and wish everyday it would be an easy process for me to have children. We talked about the exploratory operation to find sperm and the cost implications of this. We then talked about the cost implications of having children by sperm donors and the effects that would have upon our lives.

We then spoke about Monika. Monika is my rock, she is my one true love and without her I would not be here today. I have never met anyone who has supported me through life’s twists and turns as much as she has done – even now, a few weeks on from this event she is still proud to stand by my side – continue to love me for who I am and wants to be my wife. In addition is willing to do whatever it takes to have a family with me, even if that is through exploration, donor sperm or adoption. I am very lucky to have this level of support in my life and I know that now more than ever before.

Following our chat the consultant recommended reading a self-help book whilst he made the necessary arrangements for specialist genetic counselling for me, something that I desperately need. The book is called ‘The Feeling Good Handbook by Dr. David D Burns’ – it’s about £9 on Amazon.co.uk and is the best £9 I have ever spent. The first few chapters are a bit wordy but stick with it and it will teach you some amazing techniques for how to avoid situations like I have described above.

I mentioned at the beginning about a failed system that together we can fix. I know that there are a lot of people out there who are not keen on discussing Klinefelter’s Syndrome and I understand that. However we can together drive awareness and we can improve how the system deals with adults who have found out about the condition later on in life. Modern technology makes it possible to screen for genetic defects before a child is born which gives new parents a chance to get support for their children early on.

The health service does not offer the same support for adults who have just found out about this condition later on in life and you are left to find out information / help yourself.

Next week I am taking annual leave from work. On Monday I will be printing out this letter and sending it to local / national MP’s and health organisations with the intention of them a) watching my video b) making them aware of the support that adults need.

I know that many of you reading this have various connections in media, politics or working in the health service. I would encourage you to print this letter off wherever you are in the world and help me raise awareness so that we all benefit from a better service. It would mean a lot to me and to the others who are unable to come forward. I would also encourage you to share this blog post – and the video I produced http://bit.ly/47xxy it took a lot of courage for me to share my story with the world and I’ll continue to do so with the hope that others will benefit from reading this.

On a side note – something you may not know, is that if you are ever feeling down, you can always go to the A&E department of any hospital and ask to speak to a psychiatrist for obvious reasons. They will see you and they will help you – like they helped me. If you want someone to talk to you can always call the Samaritans 24 hours a day, 365 days a year – I admire their work and recently I have called them to help me get through what has been an immensely tough time.

Mistakes are always forgivable, if one has the courage to admit them.
– Bruce Lee

toughmudder

Are you a Tough Mudder?

Turns out this is not the blog post that I had intended to write this month! I’ll revisit that post at a later date.

I’m really excited to have made contact with Alison from the Klinefelter’s Syndrome Association and it looks as though I’m going to be getting involved & helping with the charity – using my skills from an online marketing perspective to help them fulfill a shared goal – awareness!

I’ve talked a lot recently about undertaking a challenge to raise awareness – started out with doing a bike ride and a gaming marathon. For both of the plans I only had support from a couple of people so we didn’t end up doing either of these – thanks to you if you did sign-up though, it’s certainly appreciated!

I was out for a few beers about two weeks ago when a friend of mine asked me if I’d like to join her to undertake a 12 mile obstacle course – asking for more details I slowly started to realise that this is no ordinary obstacle course – only the worlds toughest obstacle course devised by special forces operatives. This is the description that you can read on their website:

“Tough Mudder events are hardcore 12 mile-long obstacle courses designed by the Special Forces to test your all around strength, stamina, mental grit, and camaraderie. With the most innovative courses and 1,000,000 inspiring participants worldwide to date, Tough Mudder is the premier adventure challenge series in the world.”

Tough Mudder

I agreed to take part in the challenge and to prove my willingness I tweeted to 17 thousand followers. – no backing out now!

You are probably scratching your head reading this and wondering why I have decided to do this? Or you are looking at the picture above and imagining me rolling down the hill covered in glorious MUD! Well I’ve been promised a bright orange headband, a t-shirt and a pint of strongbow if I make it to the end after enduring fire, freezing cold water and the chance of getting my wee balls charged with 10,000 volts of electricity – that’s if they survived the arctic enema challenge!

I’m doing this as part of a team of co-workers and mutual acquaintances to raise awareness for Klinefelter’s Syndrome and also get some funds together for the only UK charity dedicated to supporting people diagnosed with this condition. If you have been following the blog since I started you are aware of what the Syndrome is and what I have had to endure throughout finding out about it on both a physical and mental level. If you are not aware and this is the first time you’ve come across the blog then best to check out my video here (over 25,000 views now!) that will give you an overview of what Klinefelter’s Syndrome is and what it is like living with it day to day.

It’s really easy to get boiled down in the negatives associated with the condition but I am determined to show others that you cannot let obstacles get in the way of you enjoying your life – and what better way than getting past 22 obstacles over 12 miles somewhere deep in the valleys of Wales!

 

Klinefelters Syndrome Tough Mudder

 

If you would like to get involved then the team (me, David McDonagh, Jacqui Ashworth, Matt Cuttle & Sarah Baldwin) would really welcome your support either by donating or sharing this story with your family and friends. The aim here is simple – to raise the profile of the condition with the medical profession, other public and private bodies and the general public so that all understand its implications, not only for the individual affected, but also for all those with whom they have contact during their lives! Do something amazing and sponsor/share on this page: http://bit.ly/pro47xxy

You have got this far therefore would like to take part in our team? To join us just go to the Tough Mudder website and sign-up for the event that is taking place on September 21st 2013 – the team name to join is Project47XXY – drop me an email on info@47xxy.me if you do sign-up.

Do enjoy the motivational video:

I’m looking forward to what happens at 24mins 47secs most!

power

The Power Of Perseverance

Last time I wrote it was coming to the end of 2012 and my video on YouTube had just over 8,000 views. In just over three months it has almost doubled in views (18,746 views) and I have received many words of encouragement and praise from around the world. This makes me feel amazing and if you are reading this blog and have Klinefelter’s Syndrome I urge you to get off your backside and do something similar – it really does make you feel better inside when you read all the positive comments.

It might seem like a long time ago since I last wrote a piece here and I think a few people may have thought I have given up. This is not the case! If you have been reading from the start of the blog you will know that I was determined to make a difference and overcome whatever life threw at me. Well life threw a few things my way including some unexpected (slightly expected) challenges to do with work. I decided that I had to prove to myself and to my colleagues that I can do the job and by doing so I put everything I had into achieving my goal.

Towards the end of last year I met Monika – and I got an instant happiness boost! I went through a few months of thinking that no-one would possibly want to be with me as I am genetically flawed. Then I thought to myself just because I am different does not mean that I cannot find happiness or love. Only you can make the changes in your life and go and get it. It’s certainly difficult and it won’t come straight away but when it does – let me tell you this: it’s an amazing feeling! 

I’ve been on the testosterone treatment for just over a year. I got excited when there was enough facial hair for me to go out and buy an electric shaver. I now let it grow for about 5 days and then shave it off. Yes it looks ridiculous having a small clump of hairs on the end of your chin. When most of my friends were growing up I suspect many of them started this way and in time they formed into something that resembled a beard or a moustache.

I mentioned the changes I noticed in my last blog one change that comes to mind more recently is strength. As I start to feel physically stronger, I feel that my confidence is growing more and more each day. I used to hate confrontational situations and I would instantly back down if faced with them. Now I’m standing up for myself although sometimes it does get too much and I have to remove myself from the situation as I feel the hulk coming out. I’ve been in a situation like this twice in the past three months. Once at work when I disagreed with a colleague and once in the pub when a friend just would not drop a certain conversation, even though I had politely asked them to change the subject. When I spoke to Monika about this, she managed to instantly calm me down and I returned back to normal – although I was still wearing those ever so fashionable purple shorts.

Purple is my favourite colour so there is probably a reason I was wearing them at the time!

I’m almost 34 years old and recently the boost in confidence has made me realise where I have come from and where I want to go in life. I woke up one morning in early January and thought to myself it’s time to make a few other changes to my life. Monika and I had planned to go away with her family and friends to the far east and I was planning to ask her the ‘special‘ question on a romantic beach somewhere in the Philippines. Due to work commitments I was unable to join her for the trip and thus my plans were tipped upside down! I was not going to let this minor set-back get in the way of being the happiest man in the world so I came up with a plan B!

There comes a point in your life when you realise you have to Man UP! & so on February 10th 2013 that time had come:

I’m still smiling from that date and we are now planning for the wedding, that is likely taking place in the summer of 2014. If you are like me and have Klinefelter’s Syndrome do not give up! Harness the power of perseverance. For it is holding your chin high, remaining steadfast and continually advancing toward whatever your individual desires might be!

I’m determined to raise awareness about this condition and help others along the way. Last year I wrote to the Klinefelters Syndrome Association to see if rather than setting up my own charity, we could join forces and use my project to raise awareness and funds for their cause. I was beginning to give up hope as it had been a few months since I had emailed them. Then sometime last week I received an email from them apologising for taking ages to get in touch with me.

The power of patience prevails! We have exchanged a few emails and they were not aware of my video but they did praise me for the work that I was already doing. I’m hoping to meet with them soon to discuss fundraising and also raising awareness! It would be awesome to be involved with them in an official capacity. You might remember that I was trying to organise a sponsored cycle from London > Paris. The number of people that signed up did not make it to double digits and I really needed about 15 people to sign-up to make it worthwhile. So for now I have shelved that idea. However I’m not giving up and if the KSA agrees I’m probably going to host a sponsored gaming marathon – as the thinking is if you can sit on your arse and play video games more people will likely want to take part. If you are interested giving up a few hours to help me in this cause then please enter your details below:

 

I’ve received many positive emails, comments and messages about the video I put up onto YouTube last year. Recently I have been contacted by several educational institutions asking me to answer questions for students. I’m not an expert in this field but I am happy to give my opinion on how this condition effects me and my daily routine. Recently a couple from Brazil got in touch with me and told me that their unborn child has the extra chromosome and they were asking me how this will effect their child in later life. I told them to be supportive as growing up will be difficult and there will be many challenges to overcome throughout life. They told me that I was a warrior and that I should be very proud of what I have done. I am – and I am very happy that I can help others!

Before you set out to do anything that you want to change in your life just watch this video;

Harness that power of perseverance!

 

 

testosterone

Twelve Months of Testosterone

Wowsaz! It’s been August since I last had wrote a piece. Quite a few things have been happening since then and it’s not that I haven’t wanted to write something. I have been writing elsewhere and mostly responding to emails from people who have found my video interesting. Funny to think that a video from me about Klinefelters Syndrome has attracted over eight thousand views on YouTube and many comments from people just like me saying that it was great! Makes me feel good inside that people are getting something out of it!

Testosterone

Twelve months have gone by in a flash and I thought it would be apt to post this piece on 12/12/12 @ 12:12 exactly! I’ve been on Testosterone now for twelve months and I wanted to document the changes:

  • Increased energy levels
  • Increased libido
  • Increased ability to focus / concentrate
  • Noticeable change in positive demeanor
  • Facial Hair (not quite a beard – but more than bum fluff!)
  • Body Hair (light)
  • Confidence Boost
  • I haven’t been to the gym yet – although I plan to start going in 2013 as the next change for me is getting fit & attempting to gain muscle mass!

Funny thing is I have noticed some other changes in my general character which I can attribute to the confidence boost. I mentioned to a friend once when we were out having a beer that it’s almost like people can sense the increased amount of Testosterone flowing through my veins – it’s like men instantly want to fight me & women… well women just want to bite me!

Recently I’ve got myself into a few situations, one resulted in me being banned from a certain establishment in Guildford for being confrontational! Prior to taking the treatment I would have just walked away from the situation or hid behind the power of my friends – in this instance I decided to stand my ground against someone much bigger than me – which resulted in me not being allowed to go back to that place. I’m happy that I stood my ground, yet it scared me a little bit how I have changed. At the time, I felt a confidence rush – I guess with great powers come great responsibility and I have to learn to master this new found confidence without it resulting in a negative outcome.

Moving on… my good friend and work colleague came over towards the end of August and we were debating the pitfalls of our age and single life – would we ever be like our other responsible friends and find a relationship. We joked about online dating and over beers began to look at the various catalogs of the opposite sex to see if any would take our fancy. It was decided that I would trial a service for one month – and I’m glad I did!

It was getting towards the end of the month and I had been on a few dates with no amazing outcome, so I decided it was time to remove myself from the service and go back to the single life. Just I was pressing the delete profile button – an instant message popped on my screen… “hello” – well.. I was shocked and thought okay this is weird! Checked out the profile , read the introductory text and thought to myself – this must be a joke. This lady is hot! Really hot and it got me excited! So I decided to respond with the usual “how are you?”

The response that I got back was a bit strange – “I have a problem, can you help me?” – eek, I thought! Turned out that the lady in question didn’t know how to make her SKY TV remote also control the TV. I thought to myself – I KNOW HOW TO DO THIS!!! So I began over messenger to give her step-by-step instructions – to an almost instantaneous reply – “Wow, you are my TV hero!” We swapped numbers and that very week we had our first date, which was on a Wednesday – an awesome Wednesday!

Everything about the date was perfect. I had forgotten all that stuff in my head about “will I ever be able to find someone to love again with this condition?” – it just went and I was for once enjoying the moment. Then I had another one of those confidence boost moments, this time instead of it being confrontational – it was a moment of me being forward – diving in and going for the kiss. It could have ended really badly – but it didn’t , she replied with “wow” (yes she did!) and that she wanted it to happen and was glad that it did! I was so happy! We left the bar (it’s now my favourite bar in Soho) said our goodbyes and I think for the rest of the week I had a perma-smile for once!

Monika

Several dates, months later and we are now seeing each other regularly and recently we have visited each others parents houses and everything.. well everything is just perfect – another reason why I haven’t had an opportunity to write much here is that I have been enjoying her company! ;D

Now with all relationships come questions about what happens next – and where we go on our journey. Recently we had a discussion about “plans” for the future and I responded with “I don’t have a plan!” – I’m on a journey. I received a perplexed response – “well you have to have a plan” a notion of where you want to go in life and what you want to do with it. Looking back over the years I had plans, I had great plans – and through this planning I have only ever experienced disaster. I think at the time of the discussion I wasn’t able to articulate how exactly I felt and I mentioned to her last night that I will have to write it down – then maybe she can understand why I never plan for the future, and why I live in the spontaneous world known as Sheridan-Town!

Rewind back to 1998 – I was a university, I met a girl (as you do) & created a plan! The plan was we would move in together, and save for a house – with the hope of one day getting married & settling down for a family. At that time I had no idea about the Klinefelters Syndrome & the thought of having a family was only part of the plan somewhere down the line. So we got engaged, bought a house near to Brighton and continued on the plan – my Dad & his wife and my little brother came to visit us in our house and well this is where the plan drifted off course. My dad had a funny turn whilst visiting us and he was diagnosed with having brain cancer – he had to have several operations whilst in my local area to remove the tumor from his head. My whole world fell apart during this time and the plan went to shit. I neglected the girl and she found love interests elsewhere at work – which caused us to split up, me move out of our house, find a new job and well… start again. This all came after my Dad had passed away, and the road leading to his departure. I couldn’t cope with what was happening around me – I was a mess. Today is Dad’s birthday – every year on the 12th December I remember my dad – rather than remember the day he left us – I remember the day he was born. I miss him dearly!

Dad

So.. I moved on – I spent the next year or so living the single life – I didn’t have a plan – I just wanted to live spontaneously. Losing Dad made me realise that you can’t plan for the future as you don’t know what is around the corner – what happened to Dad was really sudden, no one expected it – it just happened & we all had to deal with it and remain strong.

About 9 months after living on my own after the break-up I somehow managed to get myself into another relationship – still unaware of the Klinefelters at this time. Thought I was happy – had a few hiccups along the way but managed to pull through them and create another plan. The plan was that we would save for a house, so we downgraded our lush town center apartment with pool, gym etc and I would also get rid of my sports car! :(

RX8

We decided that the plan would be unconventional – we would get the house first, then look at children, then get married (as you do) So we moved into a rented house and this is where all the problems started! We started to try for children – and had no luck – so I went to the doctors and this is the time in my life a year or two ago when the Klinefelters was discovered. It was a massive shock for both of us – and again the plan fell apart! I guess she wanted a child, a house and follow the same path as all of her friends. So we split up and then three months later I find out that she announces to the world that she is pregnant, moves in with another guy (buys a house) to live happily ever!

I guess these two examples illustrate the way I feel about life planning, ends in some sort of disaster. Yes I found out about the Klinefelters – but then am I better off? I guess I am for being able to change the way that I live and feel much better for it by taking the medication – but now I have a zillion thoughts running through my head whenever someone mentions a plan. This new relationship is quite different to the others, I know about the Klinefelters now and I have had the conversation already. It’s not going to be easy to consider having a family – and the one thing that scares me the most is that we might try it, we might plan for it – and then it might get all too much… going to park these thoughts – something I’ll come back to in another post!

Following on from creating the video I have had many people write to me asking me questions about what it was like growing up. Many teachers, parents and even people with an interest in the condition have reached out to me about my opinions. I’ve had to stress to them that at the time I did not know, my parents did not know about the condition so I can only look back on certain situations and apply the knowledge I have now and how that might have attributed to the way I was feeling at the time. Therefore I have decided to collect some thoughts together and write about what it was like growing up – till the present day. I was working on a book called “Living with the X” – this is still going to be the title, probably going to pan out slightly differently to what I had originally thought.

Another colleague and friend recently designed an amazing illustration of me – and I asked him if I could use it as the cover of my new book. It’s a really cool image and I think it represents me well – and will stand out on a shelf when someone walks by:

Living with the X

In addition to this, he has also created a new logo for the project and it’s really cool! So just one thing to say – thank you David McDonagh :D

I’m fortunate to have a good job and work for an amazing creative company – each year we get to take a day out of work and either volunteer or raise money for charity. I thought about turning Project 47xxy into a charity. Whilst it is something that I will want to do eventually it’s not something that I can do on my own and need help from people around me to get it off the ground. I came up with an idea to cycle from London to Paris to raise awareness for the condition and I would like to do it on behalf of the Klinefelters Syndrome Association Looking at doing this next year and it would be great if colleagues & friends would join me in this awareness adventure. Our company appears to get behind other great charities like Movember, Cancer Research, local charities and I’m hoping that they will support me.

As we are approaching the holiday season I wanted to ask a favour from all of you who are reading this – one of the research papers I contributed to recently struck a chord with me in the final statement, can you do this for me:

Ask friends at the your next dinner party or some of the members of your family what Klinefelter Syndrome is and you are almost guaranteed either a nonexistent or incorrect answer. Ask yourself and ask others: is this response really acceptable?

Happy Holidays!

Dan

cologne

Ich bin Ihnen sehr dankbar

I’ve just come back from a week working away at a games convention in Cologne, Germany called Gamescom. So I thought it fitting that I title this blog “Ich bin Ihnen sehr dankbar”. This translates as “I am very grateful!”

I am extremely grateful to everyone who has supported me in setting up my project to help others like me. Two months ago I decided to stop being depressed and do something that would really make a difference to the lives of others – channeling all of my energy into an awareness campaign and raise some (£) pounds in the process.

I managed to raise $745 of my $20,000 target mostly through the kind generosity of friends, colleagues and received many pledges of support from the community that surrounds me in my job & for that I am extremely grateful.

These people all deserve a special mention:

Ryan Sheridan
Brooker
Jun Yoshino
Michelle Dewhurst
Lee Williams
Hannah Kitson
John Sylvester
Keith Pape
Stephanie McAreavy
Nick Silversides
James Dean
Kieran Semrau
Tom Wallis
Richard Burley
SMBayer
Nye Davies
Mark Reid
Anonymous (Thank you secret person!)

So what happens now? I’m working with a designer to produce a new information booklet about the condition that I hope to send out soon. I’m planning a fundraising evening to celebrate the launch of the charity & my new book – “Living with the X”. I’m in talks with various publications to do features on the condition & I am planning a London to Paris cycle ride with the aim of raising more funds to sustain the charity ongoing. It’s looking like the end of March/April 2013 and I would really love for you to join in — comment below if you are interested!

You can keep up-to date with the project by following me on twitter as @project47xxy & watch my video blogs on Vimeo here – please don’t stop sharing these videos, and if you happen to have any “celeb friends – as I know some of you do – ask them to do a cheeky tweet… I’ll make them a bacon sandwich & a good northern cup of tea! :D”

Thanks,

Dan

bats

I’m Batman, seriously!

So I’ve done a video for Project 47XXY – I’m not really Batman that was just a way to get your attention! Did it work?

Thanks to everyone who has contributed to the cause or pledged support it’s really appreciated!

Expect more videos from me over the next few months!

Dan

crowd

Project 47XXY Indiegogo

 

Massive thanks to everyone who has contributed to Project 47XXY on Indiegogo.com. So far I have raised $260 and received many pledges of support from those around me and I am very grateful.

If you do one amazing thing this week then go here & use the share buttons on the page to help me raise awareness about the condition known as Klinefelter’s Syndrome.

You can keep up to date on the project by following me on Twitter. If you have a story to share I would love to hear it – you can send me a message from here.

I really appreciate your support in helping me to raise awareness of the issues and implications of individuals diagnosed with Klinefelter’s Syndrome.

Dan :)

Klinefelters Syndrome