Thank you
September 26, 2008
This week, we were informed that the Rt Hon Dawn Primarolo, Minister of State for Health approved funding for:
- a nationally commissioned service for PNH patients –at King’s College Hospital and Leeds Infirmary
- funding of Eculizumab for those patients who clinically need it.
The funding will begin from April 2009.
We would like to thank all our friends who supported the PNH patient group and helped any way they could. All the people out there who came by to read this blog, signed our petition, wrote to their MPs and the Department of Health, spread the word and let us know we weren’t alone. All the doctors and nurses who have taken care of us and kept us going. All the people whose research resulted in this drug. The NCGs and our government who made this difficult decision.
We get to keep our lives. It’s very hard to express into words what the decision and the enormous amount of support we received means to me. All I can do is thank you from the bottom of my heart.
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Julie Wilson | October 9, 2008 at 2:42 pm
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.