Friday, 22 May 2009

National Epilepsy Week

This week has been National Epilepsy Week so many of the epilepsy charities have been holding events to raise funds and awareness. I attended the Joint Epilepsy Council lobby of MPs at Westminster on Wednesday. Many of us had contacted our MPs asking them to join us so we could tell them our personal experiences of epilepsy and highlight the low funding for research and care which the Government provides. My MP was "busy in his constituency", which I think means he was off sorting out his expense claims, but several other MPs did turn up and at least listen. They also witnessed a severe seizure which was not planned but must have had quite an impact...

I also attended a lecture by Prof Helen Cross, the paediatric neurologist from Great Ormond Street who say Ross when we came back from France. I mentioned that Fin has had chickenpox (the worst case I've ever seen with spots in his mouth, eyelids and everywhere - 53 behind one knee was as far as we got on counting them...) and she was very concerned to know if Ross had been immunised against them or not. He hadn't as the GP just wanted to see him when the first spots appear - turns out it can be very serious for people whose immune system is suppressed (like Ross's is as a result of the steroids). After several ours in A&E and a blood test, we took Ross last night to get his jab, so hopefully he shouldn't get the pox at all... Lesson we've learnt is that Ross's case is so rare it's beyond the experience of most GPs and we should go to the paeditrician for all problems in future.

We're having a final push in the last few weeks before our Mont Blanc ascent to try to hit our target of £15, 780 for NSE - thanks to the generosity of everyone so far, we only need a further £660. Rich and I fly to Geneva on 11th June to try on that Friday/Saturday. Hoping for good weather!

Planning a long run this evening, but hopefully not as long as last weekend's when I managed to get lost in the woods and Clair was for sending out a search party...

Monday, 11 May 2009

Happy First Birthday Ross!!!

Hard to believe it's already one year, but yes it's Ross's first birthday today - thank you to everyone who has sent cards and gifts. We've celebrated with both sides of the family in the past 2 weekends, and plan to have more cake when I get home from work this evening...

I don't need to point out to those who know us what a year this has been. The wee man has been through so much already and has so many uncertainties ahead of him. It felt very bizarre to find myself telling him I was giving him a special birthday treat this morning by giving him his bottle before his medicines, but that's the surreal world we're living in. Maybe one day we'll wake up and find out it's all just been a bad dream...

At the same time, no matter how tough it gets, Ross has a smile that can raise everyone's spirits, and I know that whatever the future brings we'll find a way to get through it together.

Friday, 1 May 2009

Why raise money for the NSE?

I came across these articles from the April edition of the American edition of Newsweek magazine. Not only do they give an insight into the lives of people living with epilepsy, but they offer a call to action to raise awareness of this terrible disease, and to insist on the funding required to make the breakthroughs in understanding and treatment which will improve the lives of epilepsy sufferers and their families. The NSE helps by funding exactly this sort of cutting-edge research.

Please click on the links below to access the full articles. Otherwise, at least just read the extract below from the editorial.

"Though the most overt examples of discrimination and demonization have faded with time, epilepsy still receives too little attention, either from the medical community or the public at large. Why? One reason is that advances in drug treatments have created the popular impression that epilepsy is now an essentially manageable condition. (Which, for two thirds of patients, it is. But that still leaves a third for whom it is not.) It is thought to be rarely fatal, controllable by medication. There is a terrible irony here: because most people with epilepsy are not in a constant state of seizure—they are, rather, in perpetual but quiet danger—their condition can appear less serious than it truly is. It is all too human, but all too true, that a problem, including the problem of a serious medical affliction, stays out of mind when it is out of sight.

Because so many of those who must endure it do so valiantly, and with grace and grit, it is more difficult for those not directly affected by it to grasp that epilepsy can kill. Put harshly, we need more of a cancerlike sensibility around epilepsy. We cannot usually see our friends' cancer, but we do not hesitate to invest the search for a cure for different cancers with the utmost cultural and political importance. We must now do the same with epilepsy. "We want complete freedom from seizures," says Susan Axelrod. "We want future families to be spared what so many other families, for so many years, have endured. Lives should not be defined by diseases." No, they should not—which is why all of us must focus on understanding epilepsy. And then we must defeat it."