Since i`ve been gone...

Updated: Aug 14

Eddison is nine years old and lives with the ultra-rare disease xeroderma pigmentosum, as well as a diagnosis of paediatric acute-onset neuropsychiatric syndrome (PANS). Join Eddison for his first monthly column—Eddison Explores as he talks about what shielding during the coronavirus pandemic has meant for him



Since I’ve been gone, when I left school on the 17 of March, my health has been so much better. Better than ever before!


I have now been medically shielding for over 110 days and honestly, I don’t want to leave this bubble because I worry that my health will go all wrong, and I don’t want that to happen again, because I feel so good where I am in life at the moment.


Do I have to leave? I guess I have to. I’ve got to face the real world again at some point, haven’t I?

It all started with a deadly virus (COVID-19 or Coronavirus, but we all know about that now, right?) and we’ve now been home for over 15 weeks and only left the house a handful of times, and that is only been in the last few weeks, after our Prime Minister said we could go out to exercise.

Apparently, and I know it seems unbelievable, (because I look too healthy right?) but I am one of 2 million people who are considered to be clinically extremely vulnerable. In short, that means if I got Coronavirus it would be bad news! So, I have had to medically shield, initially for 12 weeks and now for another 12.


Not being able to go outside of the enclosure of my garden and missing the great outdoors has been totally tough! I`ve seen the whole season of spring go passing by my window, and it looks like the season of summer will be the same. I haven’t been allowed to have face-to-face contact with anyone else, which is also really tough. No friends and no family, and believe me, zoom video is just not cutting it after 12 weeks! But if like me, you are also shielding, you already know that too.


Our first big adventure overseas was cancelled and will have to wait until next year, which was so disappointing. But don’t get me wrong, its not all bad. In fact, a lot of it is brilliant and suits me better, and like I said at the start, I don’t know if I want to leave this bubble now.


I have my mum and dad by my side 24 hours a day, 7 days a week which is a dream come true. My mum is helping me with my schooling and helping to make Maths and English seem a lot clearer to me, so I am feeling more confident in my own abilities. We are baking, building and playing and get to do this all together. (I won’t mention my disastrous Red Velvet Cake, that was inedible and didn’t even turn red—not the winner of the weekly Miller Bake Off that week!).


We are spending lots of time outside splashing in our pool, keeping cool and making up water rescue games, and lots of night play and garden camp outs and campfires.

My brother Raife and I think we are “living the dream”.

[Eddison has xeroderma pigmentosum so needs to be protected from all daylight. Night swimming means Eddison can enjoy the water without his UV protective visor]



But for me, the best thing about this situation is that I feel so, so WELL! I haven’t had any signs of the bug since this started and no need for any medication. Can you imagine - how great is that?


My mind feels clearer and I feel happier and less stressed. I no longer have to worry about open windows and doors, catching school bugs, or facing the playground and PE with my UV protection on. In short, my life is simpler, my health is better, and I have much less to worry about which makes me feel so much happier.


For too many people, Coronavirus has been way too hard and really sad, so I am very grateful that my family are all keeping safe, and blessed that we are able to make the best time of it together.


And when the time comes, that I have to leave this bubble, I guess I will just do what I always do. Try not to stress and to cope with the challenges as they come at me, after all, us kids with rare disease know better than most about how to cope in a crisis don’t we?


I would love to hear from you if you are also shielding, and how it has been for you.
We are all so different and our experiences of this lockdown will be so different from managing our health, to school provision and continuation of support services, so why don’t you share your own lockdown diary or story with us.

Written by Eddison Miller


To share your story with the #RAREYouthRevolution please email our Youth Editor Daisy Marriott

dmarriott@rarecommunication.com


To find out more about xeroderma pigmentosum please visit www.teddingtontrust.com


For information about PANS please visit www.panspandasuk.org

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