Fund Raising For Research
Why I Have Dedicated Myself to Helping Find a Cure
By Nikki Samuel, London England
Trigeminal Neuralgia (TN) universally considered to be the 'worst known pain to mankind', nicknamed, 'The Suicide Disease'. It doesn't matter where you look; you're confronted with the same facts. It doesn't matter how often you read it, it never sounds any better. It is something that we've all tried to protect our loved ones from knowing or reading because we don't want them to worry anymore than they do already. Each and every one of us has searched tirelessly for medications, surgery, treatments, complimentary therapies, vitamins and nutrition to find a way to treat the pain. In many cases, mine included, none of these searches have given us a positive result. In fact, my surgery was not only unsuccessful, it was almost fatal and it damaged my trigeminal nerve.
My life and what I can do is dictated by this unbearable, debilitating pain. I spend a lot of my time in bed, dosed up on a cocktail of hideous medications, unable to move my head and wishing I could sleep the day away to be out of pain. A lot has changed for this once healthy, active nurse who led a busy, fun and hectic life. This pain, commonly called 'The Monster' or 'The Beast' took over my life in 2005 when I was pregnant with my first, and only, child.
In my search for a diagnosis I came across many health care providers who had various opinions of my pain. Some thought I was imagining it. Someone else thought I had a migraine, another TMJ, one believed it was a sinus problem while my dentist did a lot of unnecessary dental work. Despite a lack of agreement on the cause of the pain, there was one common held belief, that it couldn't possibly affect my life to the extent that I was telling them.
Relatively soon after my surgery I embarked on a personal mission to try and raise awareness of the true impact of facial pain. While parts of my story were rare, my experience of TN was incredibly common. It defied belief that a condition so severe could be so unknown, but my own pain and the impact it had on my whole life was enough to motivate me to try and do something to change things. I'd spent several years having to watch my child from a distance and being unable to join in the fun. I'd lost so much, coped with a lot and dealt with enough, but there had to be hope somewhere. Many people in the support groups and those using the forums are all asking for research into better medications, more promising treatments and less invasive surgeries. We are asking for better options for TN and all other facial pain disorders -- but most of all, as with any condition, we want a cure! There is no talk about current research, no evidence of new treatments and certainly no talk of ever finding a cure.
Having your life destroyed by illness and finding yourself very misunderstood, unheard or not believed has a devastating effect. I cannot deny that on more than one occasion I've seriously considered ending my own life. As friends and family gradually disappeared I became more and more isolated by the pain and found myself dependent on online support groups. Nobody can possibly understand this pain and the things that trigger it better than someone who is living it. Over the last few years one person in particular has helped me through some of the darkest times and she has come to be the best friend I've ever had. Patti SanFilippo and I are kindred spirits and our arms of friendship stretch across that big pond called the Atlantic! Technology has allowed us to be there for each other during the worst times, the better times and for hours or several times a day, talking (typing), laughing, crying, supporting and encouraging.
TN has taken so much from my life, but there is no denying that it is also responsible for a friendship so strong that it has quite literally saved my life. Nothing can beat real life contact, but until the day comes when we meet in person, we rely entirely on technology. Patti and I have a deal. The deal is to keep going no matter what, because one of us cannot leave the other, so we must stay and fight. While other people have inspired me and loved ones have encouraged me to keep talking about TN and the true impact the condition has on families, the deal Patti and I made has often been my main motivation.
I've used every opportunity to raise awareness, produced graphics and images to share around social networking sites, written letters and emails to publishers, journals, national newspapers, MP's and even produced an awareness video. I've been asked to share my story with CNN, have had it published in my local newspaper, tweeted with celebrities, spoken to Members of Parliament, Lord Mayors, the Prime Minister's Office and even written to NASA for help! I've been very active in helping with the First International Trigeminal Neuralgia Awareness Day (October 7th) which was the brainchild of a fellow sufferer appalled by the treatment options available after being diagnosed with TN herself. As soon as I met Toni I became her 'side kick'!
When I was nursing, I wasn't one to stand on the side lines and watch people trying to implement change; I always had to be in the thick of things, so to speak. Evidently that was still true, because very soon I was mirroring Toni's work in the USA here in the UK. More and more people joined the Awareness Fighters and gradually we were reaching more sufferers and informing them about the International Awareness Day. People started to recognize the TN ribbon. The color teal was finally associated with TN and eventually our voice got louder and we were being heard.
I heard about the work of The Facial Pain Research Foundation and had the pleasure of talking to a founding trustee, Michael Pasternak. Their work was about to alter my own journey and completely change my personal mission of trying to make people understand the pain. Up until then, I, too, wanted better medication or a more reliable treatment option. But the Foundation has little or no interest in searching for either of these things they are looking for 'prevention and cure'. Their website is full of current information and it is impossible not to feel a tinge of excitement when taking a look. They have a mission. Their mission is to find a cure for TN within a decade and to develop therapies to put an end to other nerve related facial pains.
In the awareness video I made I said that The Facial Pain Research Foundation believes that the future might be bright. But later, I realised that I'd missed a crucial opportunity to inform the thousands of people who have watched the video about the work that the Foundation is doing. It dawned on me that as well as understanding, as well as health care providers being educated and people being made aware of facial pain, survivors needed hope.
Sufferers of TN and all nerve related facial pain need to know that there is research taking place, but not into a new medicine that might work and have less side effects or a new treatment that might be a little more effective, but research by world class researchers using cutting edge technology to find a cure! Certainly an opportunity missed, but not one lost! Knowing how many had watched my video, I knew I could make a second one, and this time I could share the hope and the fact that there is current, exciting research happening – and happening now.
Awareness, understanding and education are vital to anyone suffering with any condition, but it is said that 'the person who has hope, has everything' and I truly believe this. So often with the pain and desperation of TN we start to believe that there is no hope and the future feels very uncertain. Surely, people who are suffering with this indescribable pain deserve to be told about current research initiatives and need the hope that knowing brings. My personal mission that I embarked upon in July 2012 is now about informing sufferers of what is happening in the world of science, while still raising awareness of the condition itself.
Imagine that within some of us there's a switch and that something, at some point in our lives, triggers that switch and we suddenly develop TN. Then imagine being able to find that switch before it is triggered and fixing it so it can never be turned on. By attempting to identify a gene within our DNA, researchers are hoping to find out who is predisposed to TN. The goal in this project is to find a way to prevent those people from ever developing TN. Just imagine, one day we could prevent TN from ever happening in some people. But that is only one area of research.
If the Research Foundation has the confidence to say it will find a cure within 10 years, just consider the millions of people who are already living with the torture of facial pain, and then imagine that they are CURED --No longer a drain on their family or society -- No longer a disappointment to their friends -- No longer being unable to work or play with their children --. Finally not being too scared to travel, take holidays, arrange a coffee date with a friend, start driving again or walk along the sea front with the breeze blowing on their faces. How do we dare to believe that any of this may become the future of TN?
Well, the Foundation’s founders have years of experience with facial pain, chronic pain, research and surgery and have all seen the reality of TN. But by working collaboratively the researchers are confident that a cure can be found within 10 years. It is truly unimaginable that one day we could really have something to prevent TN as well as cure it.
Does that really mean that we could have a world where people won't have to endure the agony and the loss, the anguish and the pain that are all felt by those suffering with TN? Can we really have a world where our younger generations will get a cure? Is it really possible that we might be able to prevent something from turning on that switch? Can anybody living with TN really afford to believe it?
I think the answer is simple. How can we afford to not believe it?
We need hope. We need something to hold onto and we need to trust in the confidence of the researchers. But more than that, we need to support it, raise awareness of it, raise funds for it, post it on every social network, and in the same way that we're making ourselves heard and educating people about the pain, we could be doing the same for the Research Foundation. We need to inform every newspaper, journal, Mayor’s Office, celebrity and news channel of the work of the Facial Pain Research Foundation. They are our hope and they are on a mission to 'End the Pain'.
The Facial Pain Research Foundation is a non profit organisation. It has no employees, only volunteers; therefore, nearly all donations or funding go directly to the International Research projects to find a way to prevent or cure TN. There is no other country or state funding. They are entirely dependent on the donations from the public.
So much has been achieved by sufferers spreading the word, sharing news and updates and not allowing anything or anyone to stand in the way. It just goes to show how much 'noise' a large group of people can make. If we were to put the same amount of time and energy into raising awareness of the work, the profile and the confidence of the Research Foundation as we have for the International Awareness Day and petition, we could be giving millions of sufferers some hope for the future.
We've already shown what we can achieve by sharing information, sending e-mails, making phone calls and utilizing social networking sites. If we were committed to do the same for the Research Foundation it would raise essential funds to help cover the cost of an hour, a day or a week of research. If we were to use the combined talents of our group of Awareness Fighters, maybe we can even have a positive impact on the 10 year time frame. What if 10 years could be reduced to 9 -- or less? It is crucial that we find, host, promote and encourage fund raising events to help Unlock DNA and prevent TN from occurring or to End the Pain by finding a cure.
Step out with us today. Together we can make a difference.