it’s not rare to have a rare disease

My volunteering life is about rare disease; I know the stats, I know some of the people. When I have brain power, a significant portion of it goes to scheming and plotting and connecting and advocating and talking about rare disease. It’s not an abstract, it’s the reality of people’s lives. It’s the kick in the gut when we see a family on a flight, on their¬† way back from Great Ormond Street, or we spot the specialist wheelchair in the shopping centre. It’s the reiteration of experience when we listen to people tell their stories, which could be ours. It’s the blow when there’s another diagnosis of something complex or terminal. It’s the shock when we lose one, however predictable that loss.

We lost one tonight.

My Uncle Paddy. With Olive for over 60 years, father to the Incredible Singing Cousins, grandfather to The Next Generation. A kind, gentle, and much loved man.

He had Progressive Supranuclear Palsy, the rare neurological condition that killed his sister, my mother Herself, and a family friend, Kathleen. Three people from the same parish, all connected, all with the same rare condition which is difficult to diagnose, and for which there is no treatment or cure.

I can rant about many things. I can talk sensibly about rare disease issues. But, it seems, not tonight. Tonight, I’ve run out of all the words I use. Tonight, I miss my people. Tonight , I grieve with my people.

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8 thoughts on “it’s not rare to have a rare disease

  1. Fiona – I am so sorry to hear of your loss.
    Yet you are eloquent even in grief. You achieve so much, and this short post today will touch many.
    Love to you and yours.
    Sally

  2. Fiona, thank you for writing this. There are times when we can’t fight or be rare activists/advocates. As my GP says ‘No-one can be a superhero on every day with the word ‘day’ in it’. I am so sorry for your loss and while you grieve I will keep fighting, when I can.

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