Rare Disease Day in Belfast

On Thursday 27th of February, my boyfriend and I went on a mission up to Belfast. The cause was rare disease day. To all of you who are unaware, rare disease day takes place on the 28th of February of every year. This year the event was held in Belfast.

I had planned to go up as a representative of Histiocytosis months before it was to take place; as the disease is so rare, I doubted there would be anyone at rare disease day with any formation of Histio.

We stayed overnight in a hotel, as to avoid having to get up Friday morning at 6AM and get the train. We stayed in the Holiday Inn hotel in Belfast; I would greatly recommend the hotel, not just because it was beside Nandos, but that did have an influence 😉

The day was full of high-profile names from both the political and medical world, from both Dublin and Belfast. Some of the guests included Minister White, Minister of State for Primary Care; who talked about Irish rare disease plan. Minister Poots, Minister of Health, Social Services and Public Safety; who talked about the Northern Irish rare disease plan, Alastair Kent, director of Genetic Alliance UK, testimonies from others who had been impacted by a rare disease/someone with a rare disease and hundreds of attendees.

rare disease day 14

I thought the day was interesting, reassuring and spread hope among those dealing with rare illnesses. Out of the whole day, it was Michael Holden, who, like me was diagnosed with a rare disease later in life, which left him wheelchair dependent, and DR Shane McKee, who deals with rare genetic disorders, and talked about a system to link up health records, so that doctor(s) are kept up to date with your history and don’t have to ask the patient at every appointment for their most recent turn of events.

I feel that this would have been (still can be) beneficial in my case. Although the disease I have isn’t genetic, it still has huge impact on my life. If this system was thought of some years ago, I think it could have quickened the process for me to receive treatment to help prevent as much damage that this disease has caused.

My experience with the people of Belfast, although not too many, was an extremely positive experience. I felt as if I was part of society up there, rather than a burden who just had to be tolerated, like in Dublin. I know that everywhere has some ignorant, arrogant people who are too narrow-minded to see those presented differently as human like the rest, among those educated enough to know the difference; but in my experience, over the short two-day stay, it would seem to me that Belfast was more accepting as regards to their attitude and treatment.

The trip was planned last-minute, although I had it in mind months in advance, we never actually started to put plans into action until the week before the event. Being a wheelchair user, I always imagined last-minute travel plans would be impossible to arrange and carry out. Accomplishing this made me feel almost regular again; like anything possible on two legs is just as possible in four wheels. I have a new confidence about myself in the wheelchair, feeling a sense of normality and able to handle the responsibility which was lost ever since I fell into this situation.

2 thoughts on “Rare Disease Day in Belfast

  1. Niamh, this is lovely I was chairing the session after lunch and your question for Dr McKee really touched me.
    Come back to Belfast! I’d love to show you around xx seriously! Email me.

    1. Hi Alison!
      I’m glad I touched you with my story, I’d ultimately like to travel the world being an inspirational speaker, so your feedback is good from that point of view. I’d love to visit Belfast again too! I’m currently in college finishing my diploma, so it’ll have to be after that. I don’t think I have your email though.

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