In October 2010, the first of a swing of symptoms that lead to my diagnosis began. I was in my final year studying for my degree in Art at the time. I had been working on my dissertation.  I had a slight numbness in my right index finger and thumb, which I thought was caused by excessive use of pens/pencils at the time. Soon that numbness travelled and my hand was numb. I went to a doctor in my college and they thought it was perhaps nerve damage, possibly caused by my sleep position at night. Nothing was so major that it alarmed me, although as time went on I did become more worried. Eventually the numbness spread into my arm and by the end of November had gone to my toes. My shoes would fall off all the time. I was on a small campus and it was not strange for my college mates to find my shoe and return it to an oblivious me, who hadn't even noticed it missing from my foot in the first place (That is when my love of converse was concreted). By February some symptoms had come and gone, but I knew something was wrong with me. I went to my doctor every day for a week with complaints. That weekend I began losing vision in my right eye. By Monday morning I was left with only 2% vision in my right eye and visited my doctor, who sent me to a hospital in Dublin which primarily dealt with complaints of the eyes. There I met with a wonderful consultant who admitted me for a number of days to have numerous tests done. I had googled my symptoms, and the search results combined with the medical qualifications I acquired from binge watching Grey's Anatomy lead me to believe that I had either a brain tumor or Multiple Sclerosis.  

When MS was confirmed I initially felt somewhat relieved, I don't think I quite understood things properly at that point, but one thing was for sure, I was going to make sure I had the very best care. I was referred to a hospital with a neurology department and was placed in the care of their neurological team. I remember at the time people commented on my age, and that I was so young (I had just turned 23), this frightened me. It was so alien to me. Everything led me to believe that MS was an illness of older people. I was handed information on various treatments and told to read through them and choose which treatment I would like to be on. After much consideration I decided on Tysabri, but it was not plain sailing.  Tysabri is only provided on a hospital-based budget, and as I lived outside the catchment area of the hospital in question, it would not automatically be given to me. At the time I was trying to get through the final months of my degree and I decided that it was a fight I was not quite ready for at that time. I did look at options such as renting in the catchment area of the hospital so I would qualify, but my budget would not stretch as the area is one of the most expensive places in the country to rent. I felt I needed to get started on a treatment and so began taking Betaferon. I felt very unwell on this treatment, I was constantly tired and would find myself dreading taking the next dose as I knew that I would be exhausted the following day. I was unhappy, but clinically things seemed fine, my MRI was not showing any signs of activity and so it seemed the treatment was working for me. But something in me knew that it was not. 

The medical system in Ireland can be quite cold (this is certainly true in comparison to the care I receive in New York). Often I felt quite alone, not knowing what to do, or what to ask. I found myself submerged in an ocean of information I did not understand, it was like a different language to me and I knew that I had to do something. I researched, got to know my illness as best I could. I looked into the medications, if I came across something I didn't understand I looked it up and in time pieces started to make sense. I decided I needed more than I was receiving in Ireland, I wanted a specialist who dealt with people my age frequently, someone who dealt with MS specifically. I talked things through with my family and my very pro-active sister began researching specialists. That's when we found Dr. Sadiq! His name popped up again and again during our online searches and having read all about him it was decided that I would book a trip to see him. I needed help, I needed guidance, I needed to feel more secure, and to know that I was doing everything in my power to keep myself in as good a condition as possible. Lots of people asked why I was traveling abroad to see a doctor when I seemed fine, and when all clinical evidence seemed to support that assumption. The answer was that I didn't want to wait until things deteriorated to seek help. I wanted to avoid that deterioration if at all possible and taking extra steps, above what other people would normally do just seemed like a natural choice to me. I was 23 years old, I didn't want to look back after something happened and say 'I wish I had…'. Prevention is better than cure and I wanted to secure my future as best I could. From what I had read I knew that early intervention would benefit me hugely, so why wait. We contacted the IMSMP office and made the appointment. 

Next came the saving! I saved, and saved and saved some more, then I borrowed the rest so I could afford the trip. It would be my first long haul flight, I had never been outside Europe before and I was not quite sure what to expect. When I am an old lady and I look back on my life, I know that I will always see the decision to make that journey and see Dr. Sadiq as one of the best decisions of my life.  I cannot describe how I felt during my visit, I can't articulate it very well, but to say that I feel secure because of Dr. Sadiq is a huge understatement. From the get-go I was made to feel very important, cared about, I knew that I mattered. Quite often in the health system here you just feel like a number to medical professionals, that personal connection just doesn't happen. That is something I hugely admire in IMSMP, it is incredibly patient centered and taking a holistic approach to care really seems to be a priority. In Ireland I am asked questions that are relevant to my clinical evaluation, the last time I was speaking with Dr. Sadiq we discussed everything including my love life, every area of my life is discussed and taken into account so that appropriate and realistic decisions can be made. In Ireland, the system that is in place does not really allow for that and so I feel that the problem is treated, but not the person (if that makes sense). So, as I live in Ireland Dr. Sadiq is tasked with not only coming up with a care plan, but also in helping me decide how to navigate the medical system in Ireland so I can gain access to what I need in a system that works in a completely different way than in the US.

Back to the story! Dr. Sadiq read through my medical files, looked at my scans, spoke to myself and my sister at length, and from there came up with a plan of action. A blood test confirmed that the treatment I had been taking was not working for me as I had built antibodies to counteract it. With that knowledge and a few more pieces of new information, I came back to Ireland with a new attitude entirely.  I felt so empowered and in control, which were feelings I had not had in a long time. I was now armed with the information I needed to get the treatment I required and I had the language to articulate it.  I was extremely determined and was not going to let anyone stop me from getting the best treatment for me. I succeeded too, shortly after returning home I made an appointment with my neurologist in Dublin and without getting into detail, I came out of that meeting with my neurologist agreeing to everything I had asked for. I happily started treatment and got on with life as normal. 

The lack visibility of young people in the MS community was beginning to bother me. I was not actively involved in my national society at that point, because it seemed to me that it catered for people who were older than me. I did join a group online, it's a website called shift.ms - a social network for young people with MS. I found it really useful, you could ask a question to other patients, read about their experiences, and feel connected. I think that MS can make you feel quite alone at times, try as people might to understand and empathize, it's difficult unless you are the one with the illness. Knowing that you are not on your journey alone is a very comforting thing, human connection is so incredibly empowering and reading the experiences really helped me to become more comfortable with my MS label. I was now part of a community rather than just being a young individual with MS. The website is UK based, but there were a few people from Ireland on it. I had still to actually meet a younger person with MS, but I knew they were out there. My sister (the very pro-active one I mentioned earlier) had been keeping up to date with the national MS society news here and noticed that they had a call out for bloggers. I had never considered writing about my experiences with MS up to that point, but when she said it it seemed perfect. If I began writing about being a young MSer in Ireland, then surely other people would start to emerge too, younger people.  I sent in a blog and was selected to be part of MS Ireland's MS and Me blog team. Promoting and advocating the rights of younger people remains the centre of my focus, to take a quick quote from one of my past blogs " …When the average person thinks of someone with MS, I think they immediately picture a 40/50 something year old, but in reality there are lots of young people who live with MS and by increasing the visibility of that group, we can do so much. By acting as a united group we can strive to achieve change where WE need it, support with education and training, family planning, employment, mental health services, insurance, to name but a few issues. How can we expect to have services for younger people if we don't make it obvious that we exist? We need to clearly state what it is we need…We all have our strengths and weaknesses and we can learn from each other. My advice is to engage with others on a level you are comfortable with. We don't need to dwell or focus on the negative possibilities. We just need to support each other, and that support happens so organically when you engage with others.  " . MS and Me turned two in December, the first year - we were nominated for an award, but sadly missed out. This year we came second at the National Blog Awards in Ireland in the category of 'Best Group Blog'. We were thrilled! 

Blogging for MS Ireland has provided me with so many great opportunities. I have traveled to MS conferences and reported back on them, sharing information with the wider MS community on various social media platforms. I have learned to type quickly so I can live tweet from them (@aoifemkirwan … follow me!). 

Some efforts to raise awareness about MS include: 

As of last year I am a subcommittee board member of National MS Society of Ireland (Services Monitoring and Evaluation)Working group member for MS Ireland's Access to Medications Campaign Handbook. Myself and my little boy Adam fronted out national READaTHON fundraising campaign which promotes children's literacy while fund raising - This involved media coverage in newspapers, radio, television etc. Ask Aoife - a section on the MS Ireland READaTHON page, where children can submit their questions about MS and I answer their questions via video on the website. (This also gave me, a young person with MS, national coverage and media attention, which I feel helps change the face of MS and was collectively beneficial to young people with MS).

In February this year I helped launch the Irish 'KissGoodbyeToMS' campaign, (bravely) posing in photographs alongside past Miss Universe winner Rosanna Davidson. This campaign also gave me the opportunity to address colleges to involve younger people in the campaign. This served not only to raise funds, but also awareness of MS in the student community, which I feel was incredibly beneficial also).I have spoken at college disability awareness weeks, about living with a hidden disability while studying in third level education. I was awarded a bursary (By the European MS Platform) to take part in their 'Young Person's' event, sharing information and exchanging ideas on how best to advocate for younger people with MS in our countries - I was the only Irish delegate in that group.I was awarded the title of MS Ireland Person of the year in 2014, which was huge honor!Recently began writing features for our Newsletter - with a focus on young people who are making positive choices to manage their illness. This will again highlight young people in the MS community and increase the visibility of younger faces in the crowd, which I hope will begin to challenge the 40/50 year old face that seems to be in peoples mind's at the minute.  

At the moment I am also trying to set up a young person's Facebook group and organise social events for younger people with MS - but it's a work in progress!