#HAWMC day2

Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?

  • My mother got me interested in rare disease. Not on purpose. She had other things she wanted to be doing, but instead we all learned something about Progressive Supranuclear Palsy. The word ‘progressive’ gives a clue as to how much fun that was. I first wrote about herself in April 2011. She died 3 months later.
  • PSP affects mulitple body systems and can be hard to describe without the listener drifting off (eyes, movement, speech, swallow, blah, blah, snore…) This video gives some idea of its impact.


  • There are over 6,000 rare diseases, affecting 1 in 17 of the population. In Northern Ireland, that approximates to 100,000 people- roughly the size of a city such as Derry/ Londonderry.Collectively, rare diseases are common. Unfortunately, that’s not how it feels when a loved one is mysteriously ill and no one seems to know what it is; or when they are eventually diagnosed with a disease that nobody has ever heard of.  As Eileen, who is living with a rare disease, says: “When newly diagnosed the impact on the person/ family is like a bomb going off- everyone is stunned, the air is cloudy and you can’t see the way forward. You feel stuck in time, stranded, isolated, victimised, life as you know it will never be the same. The rest of the world carries on around you, and you have to find a new way to slot back into it. This is made even more difficult because nobody explains to you how to do it, when to do it, what to do if you need help, where to go for help, how to get there, who to ask when you get there.This is even more of a problem when the condition is rare, because nobody knows about it. It doesn’t fall under any umbrella so there is no system, set of guidelines, leaflet, specialist in place that can guide you.It is a very lonely, bleak, soul destroying place to be.” 
  • Although collectively rare diseases are not rare, people living with rare disease are particularly disadvantaged within the health and social care systems because of the lack of information, training or joined up services. Children born with some genetic conditions may not live to see their first birthday, others struggle to gain a name (and correct treatment) for their condition and those that are, happily, living longer than in previous years do not have access appropriate adult services. In Northern Ireland, both children and adults are living with rare disease. Many of those people do not know anyone else with the condition; nor do their neighbours, their GPs, nor their range of Allied Health Professionals. Those people are isolated and anxious, they may be receiving inappropriate treatment, and they have very limited support.  More than ¼ of individuals wait between 1- 5 years for a diagnosis, with many people receiving multiple incorrect diagnoses, and some patients waiting more than 10 years for an accurate diagnosis. The lack of awareness of rare diseases leads to some individuals receiving inappropriate medical treatment and poor social support; this may severely impact people’s quality and length of life.
  • I can campaign on rare disease issues because I had to give up work due to my own chronic ill health. I have issues with fatigue, cognitive disfunction and pain. I’m unreliable, unpredictable and prone to mood swings. I volunteer my time and energy to raising awareness of rare disease issues because I can do a fair bit of that from home, in my pyjamas. Nobody need know that I am the great unwashed, in a scruffy hoody and slipper socks.
  • Major life changes, loss of health (and job, plans for the future, confidence, salary etc), bereavement; it’s hardly surprising my mental health has been affected. Marian’s writing on mental health and cake is wonderful. I find there’s no rhyme nor reason to depression- there’s no easy algorithm or magic wand. I resisted medication for years and have now embraced it with great enthusiasm; it makes an incredible difference to my world and enables me to function. I muddle through.

stephen fry


I’m sure you were so enthralled by the writing you didn’t notice that was 6 points…. great points, all


5 thoughts on “introductions

  1. I didn’t know you in 2011, Fiona, so reading your links from that year helped me even better grasp what the last few years have been like for you. Yes, it’s true that being hampered by your own illness gives you “time” to be an ME spokesperson/activist, but many people I know with chronic illness, and I know quite a few, do not venture into the areas you do. They have not chosen to be a support to others. I wouldn’t dare judge those decisions, but I can applaud and say that you inspire me.

    1. Debra, part of my motivation is to distract myself from my own health. I need to feel useful, so I do what I can! Never mind the sick folk, it’s all about me 😉

  2. Hiya spit-fire spec! I think you are amazing in all that you achieve and all that you try to do. I’m with you on the distraction method, it works well for me and as you say, a laptop while propped on pillows works on those ‘I need bed’ days.

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