Comments for Living with PNH in the UK http://pnhlondon.wordpress.com Help me, internets! You're my only hope! Thu, 09 Oct 2008 14:42:03 +0000 http://wordpress.com/ hourly 1 Comment on Thank you by Julie Wilson http://pnhlondon.wordpress.com/2008/09/26/thank-you/#comment-14 Julie Wilson Thu, 09 Oct 2008 14:42:03 +0000 http://pnhlondon.wordpress.com/?p=43#comment-14 Being a fellow PNH sufferor and having received the wonderful news that life is suddenly going to be made easier due to Eculizumab being made avaiallbe to me, I'm just speakless and would like to thank my family, freinds, doctors, nurses, work colleagues and my MP for all the support and backup they have shown me not only recently but for many years. I would also like to thank Leeds for all their efforts in making this possible. The support I have received from them has been amazing. I have always enjoyed my life because at the end of the day no matter what, life is very precious, but to know that for the first time in a very long time I am truly going to understand the real meaning of engery, well I can't put into words what that means to me. Not to wake up every morning feeling worn out even before the day has started - it will be strange, but no doubt, not only will I get used to it I will enjoy the feeling of engery. Your story "My Life with PNH" was incredibly moving and one that I could relate to so well, it made me cry but also made me realise that I was not alone. I feel as if I have won the lottery at the moment, but I have to say its better than the lottery. Being a fellow PNH sufferor and having received the wonderful news that life is suddenly going to be made easier due to Eculizumab being made avaiallbe to me, I’m just speakless and would like to thank my family, freinds, doctors, nurses, work colleagues and my MP for all the support and backup they have shown me not only recently but for many years. I would also like to thank Leeds for all their efforts in making this possible. The support I have received from them has been amazing.

I have always enjoyed my life because at the end of the day no matter what, life is very precious, but to know that for the first time in a very long time I am truly going to understand the real meaning of engery, well I can’t put into words what that means to me. Not to wake up every morning feeling worn out even before the day has started – it will be strange, but no doubt, not only will I get used to it I will enjoy the feeling of engery.

Your story “My Life with PNH” was incredibly moving and one that I could relate to so well, it made me cry but also made me realise that I was not alone.

I feel as if I have won the lottery at the moment, but I have to say its better than the lottery.

]]> Comment on Facts about PNH by Jill Davies http://pnhlondon.wordpress.com/about/#comment-2 Jill Davies Sat, 02 Aug 2008 10:30:30 +0000 #comment-2 I too am a PNH sufferer who is battling with the Welsh Assembly for funding. I have worked as a trained nurse and have given almost 30 years service to the NHS, and I feel quite let down by all this.There are only 2 of us in Wales. Although we are a small number, I'm hopeful that we should have funding because there are never going to be many demanding this drug. Take heart - these things often have a wonderful way of falling into place at the last minute. I too am a PNH sufferer who is battling with the Welsh Assembly for funding. I have worked as a trained nurse and have given almost 30 years service to the NHS, and I feel quite let down by all this.There are only 2 of us in Wales. Although we are a small number, I’m hopeful that we should have funding because there are never going to be many demanding this drug. Take heart – these things often have a wonderful way of falling into place at the last minute.

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