Thursday, 27 March 2014


In this world, In today's society the true meaning of friendship has been lost due to the introduction of social media, and the race to have more "friends" on your Facebook page than your classmates. This action of adding a name to a list, is not friendship. After all how many of you really know each person on your page to the point you can trust them. Friendship means faith, loyalty and understanding of each-other, it has nothing to do with a handsome face next to a unknown name. I will admit I am guilty of not knowing some of the people on my list, of not even talking to them, they are simply names and an addition to the overall number.

However the friends I have, that have seen me at my worst and protected me when I did not have the strength to do so, they are far more than numbers, they are trusted. I am lucky to be in that rare position of loving my friends, but having fallen in love with one of my best friends. He now knows every flaw and every source of pain in my life. If I lock he knows exactly how to fix it, what to do and who to call.

To be able to chill and relax around your friends and not hide your pain is rare, but it is also a blessing. My friends have seen me cry, heard me scream while struggling to move as they help me to my feet. If they stay after such a reaction or "episode" then I know I can trust them, and put my faith in them when my body fails me.

These friends don't know how much I respect them and how much their simple actions mean to me. I doubt they ever will, but I will never stop loving them because they never ask for anything in return.

Ask yourself, who is your true friend? and what would your life be without them?

Remember you are never alone in the fight.

Kind Regards


Monday, 24 March 2014


What is it?
Who has the right or the wisdom to know what is normal?
Who has the power over others and society to set the image for perfection?

To be normal is to be born, to grow, to live and to die. That is the basic formula of every-ones life.
But what is it that makes a person say... "you are not normal" is it that you do not live your life in the same way as them or is it that you choose to wear different clothes while living the same life, while walking the same path. I do not know.

To me there is no such thing as normal.

Everyone is their own, everyone is different and nobody is the same. Everyone has a flaw and most have not yet reached perfection...for that dose not exist either. However I do believe in beauty, that is only found in acceptance of yourself. After all you are what you are, you have what you have, you do what you do, all of this makes you who you are, that is Beauty, and acceptance is the closest thing to perfection one can get.

Your Friend


Tuesday, 18 March 2014


I have never been under the impression that having HME was going to be easy. One of these paths I often think about when sitting in an empty room, or when bored during a lecture from one of my dad’s famous, "when I was your age..." speech is; children, marriage, and all the what if's? any other teenage girl thinks about in their spare time, for that matter any teenager thinks about.

In my case the "complications" are endless, negative outweighs the positive. For starters if I were to decide to have children then there is a 50/50 chance he or she could also suffer from HME. I have read about plans to breed it out of the genetic sequence. How you might ask? Essentially pre-picking your child, but where is the fun in that? I have seen how hard it is on a parent to watch their child grow up with this condition. On the other hand I know how difficult it is on the sufferer at a young age (if not through life) to be able to get to where I am and understand the reasons for peoples harsh words, and degrading expression’s. All this has brought me to come to the same conclusion more often than not that I simply don’t have a heart strong enough to take that kind of pain. Yet I still dream of a day were it will be, where I will be.

Moving on to the next “complication” as so many have had the guts to tell me. Due to the spurs on my hips (bones) there is a chance I could kill any child at birth. I often imagine the pain the child would go through, that small chance of the cruelty and suffering I could cause something so small. To say it upsets me would be to lie to you, as well as lying to myself: for you see it kills me.

Then there is the least painful of all the least emotional, and traumatising. I could die. It sounds so simple, so meaningless to me any way. For me family is everything, and most certainly worth me dying for. My VWD would mean blood, and a lot of it. My own mother almost bled to death bringing me into existence, but she did it anyway, knowing the risks.

Any partner I have will NEED to accept these “complications” for they are a part of my conditions, of me. If he does not then it wasn’t meant to be. I do want a child of my own (with all my heart) but the cost….the pain….and the risk, I fear might be too much for one soul to handle.

I would say that if your condition affects your future, if its kids or an experience, then there is only one question to ask….

How much do you really want it? How much do you need it?

This question might never stop haunting my thoughts, or lingering in the shadows of my mind. Then again it could be something that I need to keep me going.

Remember you are not alone in the fight; there are always friends close, even if you do not see them…

Your Friend


Friday, 14 March 2014


"Today is a new day, and tomorrow must be better than yesterday...."

There is no site more upsetting that looking into the eyes of a person drained of their hope. For in their eyes they hold the pain, the memory and their fear. When mankind has lost hope, when you loose hope, it brings you down so far you feel like your own body is creating a cage around you, you can't breathe, you are always thinking of why, why you? Why did god (if their is a god) give me this illness, this condition or disability....? 

I find this question is in the mind of many men, in the mind of everyone. I frequently ask myself this question, so simple, yet so complex.... 

Why is their pain? why is it only some people have walls in their path and others have none? The answer is...its complicated. In life there must be good, there must be bad..."ying and hang" so to speak. Some feel we are being punished by god for the sins of Adam and Eve....others feel they just go dealt a bad hand, there are so many reasons well tell ourselves as we fall asleep at night in our sanctuary. 

Is god punishing us? No. 
Is it down to luck? No. 
Is it he loves some more than others? No. 

God if he exists made you the way you are, why? because to him you are beautiful, to him you are the way he wanted you to be. Sure its hard but think, would you change everything to be without your condition? or would you still want to live the life you lead. 

To me the condition, the illness, or the disability is what makes us who we are. Without it who would you be? It has helped me so much, my illness has helped me see better, I can see the pain in others because I know it myself. 

Remember you are perfect just the way you are, and don't let anyone make you think otherwise, because there will come a day you see the beauty in yourself.

Nobody is alone in the fight, count on you friends and family, because they see you for you...

Kind Regards


Wednesday, 12 March 2014

There are many different ways someone can be Brave. Bravery can be in the smallest gesture to a loved one, Bravery can be seen in ones eyes when they look upon their child, Bravery can be shown through words or demonstration of ones opinion. 

Why is it people always say someone who suffers an illness is Brave? This question has been brought up a few times now, so I feel it would be best for me to answer. 

When people say this it is not directed at the pain, nor is it at the condition. When this is said, it is said to show the bravery of the person. For it takes their strength  and determination to go from one excruciating day to the next, to overcome the walls and labels they have been given. It is in doing so that a man shows true bravery, He shows his bravery in his perseverance to live. 

So I ask you, to ask yourself...are we not all brave. For something as simple as making a new friend, getting out of bed and going to work or putting on a smile, can be terrifying for this is a leap of faith, faith in ones-self, or faith in another. 

Remember you are never alone in the fight, there will always be someone there to help you or to listen. Feel free to share your story or feelings on the main page, and don't forget to dream, big dreams. 

Kind Regards

Your Friend 

Monday, 10 March 2014

Today, I have achieved so much. Reached so many people: got so much in Return. For the first time in a long time I feel happy. Not just happy on the outside, my smile is not false today, it is on the inside. I had forgotten how nice it was to feel important and how great is was to feel human. Despite the doctors not knowing the reasons for my pain, and why I cry myself to sleep and when I wake, today it does not matter. After all today I can be proud of this, I had someone else with HME contact me for the first time ever today in 16 long years. I don't feel alone or in the dark, I feel like I can breathe again, and that feeling, that sensation is intoxicating and wonderful.

I have been told it could take up to 3 months for me to be seen again by the right people and yes I was upset, and yes I might be feeling low tomorrow, but today, right now I am just so glad that I have done what I set out to do. I pray that I will continue to do so...because to help other truly is the best feeling one can experience.

Everyone should remember that they are not alone, that they are free to share their story on the main page on this Blog and inspire others, Everyone is made the way they were meant to be made and that makes them human, which makes them beautiful....
Kind Regards
Your Friend Jordan x