Petition - Stop denying access to medication for people with narcolepsy

The charity, Narcolepsy UK, has started a petition on Change entitled "Stop denying access to medication for people with narcolepsy". A subject that I feel incredibly strongly about. In the UK, pwn's have to apply to their local health boards for medications such as Xyrem, a drug that is first line treatment in other countries and for very good reasons. These applications are rarely successful, usually due to financial reasons. It took me two years and lots of fighting before I was granted xyrem 9 months ago. I was lucky, others are still fighting. Please consider signing and sharing. It could make a real difference to many pwn's in the UK.

*** SIGN HERE ***

Narcolepsy UK state that...

"Effective and approved medication (particularly modafinil and sodium oxybate) could be available for people with narcolepsy in the U.K. but many NHS Clinical Commissioning Groups across the country routinely "blacklist" or deny patients this medication they need by stating it is either [in their opinion]"not cost-effective" or by reference to the irrelevant consideration of how it is sometimes abused by people who don’t have narcolepsy.  

We believe the right to access effective medication is a fundamental human right. It should not be down to the judgement of either an accountant or a pharmacist in the NHS to deny an individual the right of access to treatment that could see them function in society as either a family member, work colleague or simply a friend to others. We believe that clinical doctors are in the best position to judge the most effective medication and in consultation with their patient, their recommendation as to medication should be given priority – not the decision of accountants and/or finance controllers of CCGs.fective and approved medication (particularly modafinil and sodium oxybate) could be available for people with narcolepsy in the U.K. but many NHS Clinical Commissioning Groups across the country routinely "blacklist" or deny patients this medication they need by stating it is either [in their opinion]"not cost-effective" or by reference to the irrelevant consideration of how it is sometimes abused by people who don’t have narcolepsy."

Narcolepsy UK Conference 2014

The 2014 Narcolepsy UK conference is to take place in Birmingham next month and excitingly, its a two day conference. I attended my first conference last year and it was an amazing experience, truly life changing. I urge anyone who has narcolepsy or supports someone with the condition to consider attending. I promise, you wont regret it. There's enormous power in meeting others who truly understand and so much to learn from one another.

Never attended one before and a little nervous? 

This is completely understandable. Last year I hid in my hotel room the night before the conference, despite being invited to join others I had spoken to at length online for a drink. Why? Pure nerves, with a mind full of questions like...what should I do if someone has a Cataplexy attack in front of me? Is there an etiquette? Is it OK to move them? My advice is to remember that these nerves are perfectly normal, most people have them the first time. As a suggestion, how about arranging to meet another pwn (person with narcolepsy) at the hotel entrance? If you don't know any others, contact me and if I can, I'll walk in with you! Just don't let nerves be the reason for not attending.

Where? When? How much?

The Ibis hotel, Birmingham, B6 4ST
18th and 19th October 2014
Tickets - Adults £30, Young People (aged 12-18) £10, Children (up to 11) free

Further details can be found on the Narcolepsy UK website here.

My Life with Narcolepsy

Its been a while since posting last. To say I've been knackered doesn't even begin to

cover it. During my hazy exhaustion I was contacted by an agency who wanted to write a piece on my life with narcolepsy, which ended up in the Daily Mail newspaper. Its by no means the article I would have liked to have seen printed, and some of the quotes weren't actually mine (those who know me will be able to guess which ones!); however every little helps, right?

I've already been contacted by a handful of people who have been struggling with the diagnosis prcoess, thanking me for another avenue to consider. All of which are certain that they've had the same OMG moment I had when I self diagnosed 13 years ago (after reading about a woman's experience in a magazine).

So here's my story. It's just one persons experience of the condition and as we know it affects people in different ways / severity. I hope that my story helps someone, somewhere.

http://www.dailymail.co.uk/health/article-2605838/My-narcolepsy-means-I-nap-FOUR-hours-day-Mother-says-shes-tired-fallen-asleep-ON-moped-loud-speakers.html







Ignorance
The comments that the article received on the newspapers website, were predictable and reflected the ignorance people with the condition endure daily. I was fat, lazy, depressed! It was disheartening that despite being presented with scientific fact, people STILL preferred to believe in ignorance. Ok, so I'm one out of the three, however in my defence I'd like to see anyone constantly walking around like they've not slept for 72 hours not put a few pounds on! My weight gain is very much a consequence of the condition.

The lazy label contantly bugs me (previously written about here - The Lazy Label).  A relatively new blogger has specifically addressed the ignorant comments my article recieved and boy did she do a good job. Go Sharon!! Her post can be found  here - Idiocy vs Actuality.

Dear Me - A letter to my younger self

"If you could go back and speak to yourself on your diagnosis day, what would you say?"  The 'Dear diagnosis' blogathon, is Julie Flygare's lastest project, inviting people to write a letter to our ourselves on our diagnosis day. Here's mine...

Dear Me

Congratulations, you finally got your diagnosis!! After years of not knowing what was wrong, it's good to be officially told that you're not crazy or lazy, isn't it?! Enjoy the relief that accompanies this label, as the journey ahead is going to be tough. You probably don't realise it at the moment, but your symptoms are going to affect most areas of your life and impose restrictions you've never had to consider before. Effective treatment is going to be difficult to find and after a few years you will go on to develop symptoms that will make life all the more painful and complicated, whilst rendering you unfit to work or drive. These things can't be changed, however how you decide to view them can be and make all the difference. You're at a crossroads point and the direction you now take will determine how you feel about your condition, your limitations and ultimately yourself as a person.

One route leads to Downtown Denial and the darker area of Depression. Here you'll try to convince yourself and others that your symptoms don't really affect you or interfere with your life. However what begins as denial, soon becomes depression. The responsibilities that come with being a mother, a wife and an employee with a stressful job, will take its toll and you'll soon be very aware that you're struggling to juggle everything in comparison to others. I know you remember, your response is easy to predict. You'll feel a failure for not meeting the expectations you have placed upon yourself - not being the person, the parent, the wife you wanted to be. Stubbornly, you won't want anyone to know that you're having a difficult time. Instead of admitting to others that your situation, abilities and how you feel about yourself have changed, you'll choose to silently suffer; pretending to the world that everything is under control. You'll maintain this silence in vain attempts to avoid burdening others with your darkness and consequently never feel that you can be truly honest with even those closest to you. But ask yourself...who will you talk to when things become tough? Who will you share your troubles with when the inevitable black cloud sits heavy upon your shoulders? When you wonder what the point is when you work so hard, yet achieve so little? Because these thoughts will come and the darkness will deepen, until you reach a critical point where you will ask yourself one very important question...'Are the people you care about better off without you in their lives?'. This is your rock bottom. You'll recover, but unfortunately still fail to learn that its better to be honest.

Should the children of PWN be given the influenza vaccination?

The association between Pandemrx / influenza and narcolepsy has never been so relevant to me until today. My 12 year old was due to have the new flu inoculation at school and as a PWN it raised an interesting question...are there any risks involved in having my children vaccinated, given that they may have inherited the narcolepsy gene from me? At the moment, there is no official advice that is specific to PWN, so here are some facts for parents to take into consideration.

Wise words

Yesterday another PWN shared some advice that was given to her by a doctor. These wise words have helped her over the years and I think most of us could benefit from hearing them....

"It's YOUR BODY, YOUR LIFE AND YOUR ILLNESS. Nobody else will have it like you, so do whats right for YOU. Stop feeling guilty, it will only make things worse and add stress."

I personally have to take regular naps throughout the day.  This approach enables me to successfully manipulate periods of wakefulness and alertness to coincide with my children being in my care. This is personal to me and my circumstances, everyone is different...How my symptoms affect me maybe different to how they affect another PWN. We all live very different lives, with differing roles and responsibilities to maintain....WE ARE ALL DIFFERENT and how we learn to cope and manage will be different. There is no right or wrong way, just the right or wrong way for us personally.

Background image by Jacqueline Barkla

One thing that does remains the same for most PWN is that it's all too easy to get caught up in the everyday and forget that we also have to look after ourselves. I'd even go as far as saying we have a responsibility to take care of ourselves. Life is a balancing act and looking after ourselves should be part of that equation. Occasionally we need to remind ourselves of this, stop and really listen to our bodies. I know it's a reminder I would benefit from.

Guest Post: Soloman Briggs and his new book

My name is Solomon Briggs, I've had Narcolepsy with Cataplexy since childhood, yet didn't know what the cause of my troubles were until a handful of years ago. As a child I could not raise my arms while being tickled, through my teens the tiredness disguised itself from me, but not to others, through my 20's I collapsed frequently from Cataplexy. It was during an internet search of "laughter AND paralysis" at age 28, that I first discovered the word 'Cataplexy' and began my journey of grasping the condition, as best I could.

I've recently self-published a book of illustrations, descriptions and factual information on this complicated condition. I hope to spread awareness, as Narcolepsy with Cataplexy is very misunderstood particularly by the general public. Unfortunately this is also the case with many doctors; hopefully it will be beneficial to others out there.

The illustrations intend to portray depth into the experience of living with the condition and emphasises the symptoms. There should be plenty within the book for those with and without the condition.




Soloman's book 'Expressions of my own Narcolepsy with Cataplexy' is available at Create Space and Amazon.com, priced at $14.99 and Amazon.co.uk priced at £11.57. An eBook version is also available at Amazon, priced $9.99. Soloman has his own blog at http://Narcoplexic.com. Good luck Soloman, I can't wait to get my hands on a copy :)

Narcolepsy-Focused Guides / Helpful Info

Narcolepsy-focused guides and helpful advisory pages. I'll add as and when I come across things of interest.

“Management of narcolepsy in adults” EFNS (European Federation of Neurological Societies) guidelines for treatment of narcolepsy (2011)  https://attachment.fbsbx.com/file_download.php?id=295757320560958&eid=ASv8PDgdwUKYdqV8iRNUxsy8a99otsjjfCBBZT593emLw6R__5UXK08JnHQbrEUWdoU&inline=1&ext=1376788703&hash=ASujj__iDfukF1P7

Narcolespy-Focused Articles

I'll up date this list, as and when I see things of interest.

“The Science of Sleep: Dreaming, depression and how REM sleep regulates negative emotions” http://www.brainpickings.org/index.php/2012/08/13/the-twenty-four-hour-mind-rosalind-cartwright/

“Science of slumber: How sleep affects your memory” http://www.npr.org/2013/02/08/171486710/science-of-slumber-how-sleep-affects-your-memory

Overview of the FDA public meeting on nacrolepsy

The FDA public meeting to gauge patient perspectives on narcolepsy / cataplexy took place yesterday (24th September 2013) in America. A recording of the meeting will be posted here, although may not be live just yet. Ten patients bravely sat on the panel and described how the condition affects them and their families. As you can imagine, peoples stories were emotionally charged and heart breaking to hear; with recurring themes of self-loathing, guilt, fear, shame and embarrassment being described. Their willingness to provide such open and honest accounts of their lives should be applauded and I thank everyone of them for being brave enough to tell the

Living the nightmare

It's 12.57am....it's 1.14am....it's 2.45am....many of my draft posts have started this way recently, all describing why I'll purposefully try to keep myself awake at times during the night. Sounds bizarre when you consider that I desperately crave a good quality nights sleep, doesn't it? Sounds even stranger when I say that this is a response to dreams, nightmares. Hang on, what? Dreams? 'Nightmares'? Most people can understand the negative effects of say hallucinations or sleep paralysis, but dreams? Come on, I'm kidding right? These are all typical reactions by those with average sleep patterns. However, say it to another PWN and the response is very different, because they know / understand....

For the attention of all PWN worldwide

It's an exciting time for the worldwide narcolepsy community. As many of you will know, narcolepsy was selected as one of the 12 initial diseases of interest by the US FDA (as part of the Patient-Focused Drug Development Initiative) earlier this year. The PFDDI maybe an American based initiative, however I'm sure most would agree that the research opportunities that can potentially arise from it, will benefit all PWN worldwide.