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Rare Disease Day, 2016: Even Rarer Than a Leap Year, #RareDiseaseDay

Last day of February and a leap year too.


These only come around once every four years, rare enough as days on a calendar go, but not quite as rare as some of the lesser known diseases and conditions that exist, not to mention those who live with them.


And now I present:

To the People Who’ve Never Heard of my Rare Disease – The Mighty

I wrote about having this article I’d written published when it went live, over a month ago, but it bares repeating I believe, today especially.

Today is

Rare Disease Day

and I need to keep talking about it because these things affect so many people’s lives, not only mine and my brother, every single day.

So please share and read and educate yourselves if you can.

There are so many different kinds,

and on this RDD 2016 I got to share my story and personal message with a wider audience. I hope it helps. I hope I can help.

Rare Disease Day 2014


Rare Disease Day, 2015: Ventilation


13 thoughts on “Rare Disease Day, 2016: Even Rarer Than a Leap Year, #RareDiseaseDay

  1. I remember this article Kerry; it was very enlightening. I didn’t know that you wrote for The Mighty, I just found out about a few weeks ago and was thinking of submitting some material but I have to get this store up and running first.

      • You’re welcome. Setting up the store was more work than I initially anticipated but I so enjoy doing work like this but at the same time of course I begin to feel stressed. I wanted to open last week and here we are already in the middle of the following week. The good news is I’m almost ready.

  2. Hi Kerry,
    Just a fly-by visit at the moment and I’ll pop back to read the article. I recently read an article about huge kidney transplant marathon. When a random stranger decided to donate a kidney, then enabled a string of transplants to go ahead. They were using donors who didn’t match their person but matched someone else…a bit like a dating service for matching kidneys. No doubt, you’ve heard about this but like me, would find this story touching.
    I’m having a Tim Tam to celebrate RDD! Tastes much better than kale!
    xx Rowena

    • I heard about these. It’s an interesting concept. Whatever works to increase transplantation. I just saw a story on the news here today about a two-year-old who needs a kidney. I was 12. I can’t imagine being that young.

      • It must be complicated. I assume you need to take anti-rejection drugs after a kidney transplant? It would be hellishly hard on the family but it could be easier for a 2 year old to handle than a 12 year old. My son turns 12 this week and it’s a critical time in your life moving from childhood to becoming a teenager and wanting to fit in and keep up with your friends. Have friends. Being too young to know what’s going on could be an initial blessing for the child. I don’t know. That said, you never want to be that sick you need an organ transplant.

      • Puberty is not a good time for anything! My Mum talks about how her brother got rheumatic fever at that age and spent what I think amounted to a few months in hospital and then wasn’t allowed to play sport, which was a huge thing apparently.
        Looking at my son’s world, it seems to be a time of intense conformity and not a good time to have something major happen in your life…especially given the infusion of all those hormones as well!
        So pleased I’ve been there done that although now my kids are on the cusp of it all. Yikes!

  3. Bee Halton says:

    Hi Kerry, I read the article and am quite impressed. As I do not know you that long I didn’t realise you suffer from such a rare disease. That must be a pain going to a new doctor and spilling it out for them time and time again. You are one hell of a resilient lady!!!!

  4. Pingback: TToT: Woman In Black Blouse Holding Black Bow – Shadow Bowing, #10Thankful | Her Headache

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