www.dcumps.com is the place to be tonight. From 9pm tonight (Irish time) all the way through to 9pm tomorrow, MPS, a society in DCU, Ireland will be holding a 24 hour live broadcast charity fundraiser in aid of Histiocytosis. There will be great entertainment for you all night! All information and links are available on the website, and don’t forget to let your friends know! The donation link again is https://www.justgiving.com/dcutv/4w350m3/donate… please donate as much as you can to this non government funded charity. This cause means an extra special lot to me as this disease directly affects me and my life. The Histiocytosis Research Trust has never received such support from a charity fundraiser like this before, and it would mean the world to have the support and donations from around the world!
Imagine being diagnosed and having to fend for YOURSELF over a disease, because it is considered “too rare” for international research into finding a cure, too rare for government funding and “too rare” even for national recognition in your own country
Imagine relying on the knowledge and experience of others in a dedicated forum who are more likely to be better informed about your condition than a medical professional.
Imagine having a forum be your first go to place for answers in the case of a medical emergency, rather than your local hospital; because all that doctors will probably do is overlook your condition or worry and think you’re “crazy”.
Imagine having to fight your doctor’s decision for a second opinion, or never being able to relax, because, at any moment, this disease can resurrect from the dead.
Welcome to the daily struggles I, 16 others in Ireland; over 1,500 in America and over 2,000 worldwide, (and that’s just on Facebook,) face living with the same particular “rare disease”. Why rely on other members over doctors? In the event of a rare disease, unless life threatening, doctors see little benefit for finding a cure. But for the small minority, it could mean the difference between a good quality of life, or bad.
I have a disease called Histiocytosis, a rare blood cancer, which, if you’re lucky enough to survive it, as a compromise, you’re stuck with it for life. This disease which was cursed on me at three years old was treated with chemotherapy and was in remission for ten years. Unluckily, I had late effects, in the form of a degenerative condition called ND CNS I was diagnosed with at 13 years old. Five years of fighting a battle that was inevitable to be lost, I had to surrender to a wheelchair because of no treatment to prevent my condition deteriorating. At 18 years old I faced a transition which could have been avoided, if only Irish doctors had more empathy and compassion towards the lives of patients with rare diseases. I am just as entitled to a good quality life as anyone else, but I am denied this simply because of a disease considered too uncommon to be worth funding for a cure. A disease no one takes a second glance at because “it’s unlikely to affect” them or a loved one.
The unfortunate reality is that the world is run by money, and the sad case is that if an illness doesn’t affect enough people to cause an impact, that illness is swept under the carpet and turned a blind eye to. Instead we should be at disposal to help; Empathetic to assure an individual a life of stability, despite the statistics of an illness likelihood, because life is about helping those less fortunate, and nothing is more unfortunate than having to face a problem alone. Nothing is more isolating than knowing you are the black sheep that no one wants to help.
A rare disease may be unlikely to knock on your door, but if the day comes that it does; wouldn’t you like to be assured there is a cure? Fight for rare disease awareness. Care for rare. Because I’m sure you wouldn’t like to find yourself facing a rare disease someday that no one gives a second thought about.
Niamh ni Ruarí
Dealing with the fact my mobility has declined from independent to now needing a wheelchair, caused by a heartless, unforgiving, relentless degenerative condition is still hard enough alone for me to process. In fact, living in a world designed for two legs, and not four wheels means a challenge EVERYDAY that someone with working legs would take for granted.
When someone with NO ENTITLEMENT abuses the services provided for those with extra needs, it may be disapproved by many, but nothing gets done this way to ensure for this not to happen again. But when someone WITHOUT need to use services designed for people who do and PREVENT genuine users from availing of these facilities, this is when it pisses me off.
On Monday, the special needs toilet was engaged. Who came out was a man who started apologising to me saying he was “feeling sick”.
Hmm, I never got the memo saying it was acceptable for people to use special needs toilets to deal with an insignificant emergency, at the risk of preventing those who sincerely need them.
Institutions and wheelchair friendly buildings that only provide one wheelchair facility, shouldn’t necessarily be considered a wheelchair friendly zone. One special needs facility to cater for all is bound to run into some with genuine needs waiting to use it, which is almost impossible for services when catering non needing people.
In my university, there are about a million and one facilities for non-needing students and only ONE. In each building for needing students. This includes toilets, elevators, ramps and automatically opening doors. Services that ideally would be respected and not abused by users who don’t depend on these, but unfortunately are.
One special needs facility to serve for all users is a bit ridiculous. I’m sure there would be uproar if only one facility was provided to fit for all users with full use. So why are individuals with special needs treated inhumanely in comparison?
Does this seem fair?
The world is FAR from equal to all situations in life. But I won’t rest until there has been at least an improvement.
Lovely example of ignorance and no respect for others whose only option is to use special need services:
Hello one and all!
I’m so sorry it’s felt like a decade since my last post. This year has been quite eventful.
1. Firstly, I met the love of my life in early January. We’re head over heels about eachother. We’ve had a similar childhood, both full of hardships; we have a similar sense of humour, music taste, attitude to life. :’) Yes, it kind of breaks my heart to think of how much my condition could deteriorate. I don’t want to leave him with someone to care for rather than have to love for the rest of our lives.
But anyway! enough of imagining the worst. We’ve been a couple for the last year, and quite honestly, he is my rock, my friend, my everything; he’s one of the best things that has happened in my life. Yes, we have hard times, but we love eachother much more than to let the bad times effect our relationship
Second and probably biggest
2. I’M NOW A MAMA!!:D My beautiful boyfriend gave me a beauiful son. I was pregnant for the majority of the year 2016, hence why I was so quiet. My life was set to change the moment I decided I wanted to keep the baby (getting rid of him was never really an option or consideration). Now my life has a purpose (well two) I have never felt so happy to have resisted my suicidal thoughts all those years ago. I love my son and want to see him grow up.
We all know how hard life can be at times, especially the transition from childhood to adulthood and the responsibilities that are now all of a sudden up to us to take care of. When you throw in the extra complication of mental health issues to the mix, completing this adjustment seems an impossible task.
Life has a tendency to throw us an unexpected curveball when things seem to finally be going well. But by continuing to try balance life responsibilities along with a new challenge is most likely a recipe for disaster, (depending on how serious the challenge is).
Putting life on hold in order to focus, to sort out or to try get your head around these challenges as well as we can should be in no way seen as taking the easy way out, being selfish or letting anyone down. What’s worse is if something drastic happens and loved ones are left wondering “what caused them do resort to that?”
My challenges started in the early years of secondary school, when I was diagnosed with a neurodegenerative condition at age 13. If I knew then what I know now, that it’s ok to take time out to focus on yourself, my mental and physical health might have been preserved a little bit more.
They worsened when I was expected to just continue life as if it was nothing. From my perspective no one was empathising with my situation or cared for my emotional well being having to adapt to these changes; not friends, family or even DOCTORS!
It was like a taboo subject. I was noticeably deteriorating, but no one wanted to bring it up.
In school, all that matters is the results from exams and academic shit. Personal struggles can’t inflict on this, so when you’re handed an EXTRA responsibility to juggle, the priorities get rearranged, focus changes, all of a sudden, what was once the primary challenge in life now seems so irrelevant for future happiness.
The trouble with having a rare illness is that not many people relate to the complications which comes along as the baggage entailed, alienating a person and making us feel like we are facing these struggles alone, making a person feel less like we ‘fit’ in with society. This had a huge effect on my confidence, the feedback I would receive that nobody cared about this physical deterioration that was happening to me as a result of a rare condition obliterated my confidence of self worth.
Nobody has the right to make you feel unimportant. That’s why I truly believe now it should be perfectly acceptable to take time out to focus on yourself, your issues, your struggles, no matter if you’re in school, college, uni or working. Who cares what others think? Cos at the end of the day, if you’re unhappy about your situation, nobody but you can change that.
We’re all in this for ourselves so being selfish to reach the level of self acceptance to our standard is not a decision to be frowned upon, but really a brave decision to acknowledge that you need a break to work on personal struggles.
** disclaimer: opinions are my own as a result to my experiences and interpretations and should not be taken as fact.**
The good old days, when music was played through a CD player, when movies were recorded on videos, before social media possessed a huge craze over society; but most importantly, before terrorism was as frequent.
Society has most definitely moved on from the nostalgic memories I clutch on to. Living with a degenerative disease since 13 years of age, it’s understandable why one would hold on to the memories of a better time. Adolescence and young adulthood is probably one of the most delicate times while growing up. During this time, we face life changing struggles and questions, we are also exposed to realities our parents and society once protected us from. In 2015, youth face suicide, terrorism and an age where controls on exposure to unsuitable material, can no longer be as easily censored.
I write this after the news of events in Paris, Russia, Lebanon and Turkey and I am wondering when and how did the world go wrong to start this trend of mass killing and the practice of radical terrorism to this degree; to the point where innocent lives are being torn apart.
My generation is the worst so far to be growing up in. Why I say this? Because so much has changed in such a short time. Growing up with a peaceful, happy childhood, being sheltered from the harrowing events capable in life, to the sudden exposure of the possible devastation one human can inflict on another. It is inconceivable to imagine the reasoning behind the monsters who commit such acts.
The degree of U-turning from one way of living to the other end, can be understood as hard to grasp. Unlike any other disaster, a lot of disasters today seem to be man made and rising, the destruction is magnified and the evil contained in the perpetrators more revealed now than ever before.
The world has lost its mind, and only love can save us.
“Darkness cannot drive out darkness: only light can do that. Hate cannot drive out hate: only love can do that” – Martin Luther King Jr.
I created a short video last night, hoping it will help kickstart my public speaking desire. Feedback is most welcome. Let me know what you think and share away! my pretties >:)
Last Friday, I could walk!!! Ok, maybe not as independently as I would have liked, but I still completed the task which two years ago would have been unthinkable.
With the help of an exo skeleton (a machine I’ve been dreaming of using for over a year)
Since Friday, I have been making major efforts to get Histiocytosis known by society. I will not be satisfied that I have created the needed awareness until people say “Histiocytosis, I’ve heard of it”, until doctors see this disease as life changing as they do cancer, until Histiocytosis is no more an illness to be worried about because there are effective treatments to stop this disease progressing.
Today, Thursday 4th of June 2015 I met minister for health Leo Varadkar. I let him know of my presence and made him aware that what’s being done for Histiocytosis in Ireland is not enough.
I’m no longer upset or on the verge of tears at the thought of this because I believe there will be other methods to allow my independence back (exo skeleton for example).
What I do hope for, is that other people with this disease, that’s younger people, older people, people with life threatening conditions, people with more life limiting conditions get the attitudes they deserve from doctors to care enough to help them.