Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching to some of the slightly older members of our community who know what it is like to grow up with a rare disease. By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
This entry comes from Joe Rumney! Joe lives with Cystinosis after being diagnosed at a young age.
This is Joe's LETTER TO MY YOUNGER SELF!
To Younger Joe,
How does it feel to be where you are now? For me time has passed, for you, however, it’s still happening…
There’s a lot to get through, so I hope you’re paying attention - I know how your mind can wander sometimes.
Everything seems uncertain right now, but as the years go by things will become clearer and you’ll start to understand who you are as a person.
No, you didn’t have the best start in life, but your parents fought extremely hard for a diagnosis when you suddenly became unwell at barely 14-months-old.
The GPs were baffled, from a simple infection to suspected diabetes, you were diagnosed with everything under the sun. Until one day, a specialist doctor at a local general took one look and diagnosed you with Cystinosis straight away.
Hospitals have been following you around for some years now, bad news - they are for me too, and probably more so than ever before. Though you probably had guessed that already, right? I won’t go into detail - probably best to be ignorant, I think. Anyway, you can use your trips to London for check-ups as an excuse for a day out! (Warning: Train fares are bloody expensive.)
Eating was, and sometimes still is a struggle. It’s no fun being the last person to leave the lunchroom because eating makes you nauseous, especially with that battle-axe teacher looming over you. School isn’t for everyone, and you’ll quickly learn that.
I can picture you now, walking along the corridors with your head slumped, looking at the ground, terrified that your breath smells because of your tablets, or because those frown lines are getting deeper with each day.
In time, however, these problems will become smaller and smaller, and you’ll start to worry a hell of a lot less. Just focus on your exams (which you will pass by the way), and you can leave school with your head held high.
Below I’ve listed some key life events for your future:
1st October 2014:
This day will be a defining moment in your life - at 18-years-old this is the all-important transition from child to adulthood. Life is serious now.
The transplant was a huge success, and the new kidney’s function improved almost immediately after the operation! Dad’s kidney had given me a second chance to live a healthier and happier life than I had done previously.
The sickly yellow colour of my skin had eased, and I looked so much better for it! Of course, Cystinosis was still an enormous part of life, but the future looked bright.
3rd May 2016:
I did it - I passed my driving test! Now that’s an achievement. Finally, I have the independence that I’ve been dreaming of for donkey’s years.
22nd July 2020:
It had been in the back of my mind for a while now. Now my worst fear had come true - I was showing signs of chronic kidney failure again.
I was strong and held face during the appointment with the renal doctor.
When I left the hospital, however, I burst into tears - the emotion just became too much. “Back to the start”, I thought, but I am still hopeful to this day.
Don’t worry though - you’re strong, and you will continue to become more self-assured as time goes by.
Good news - there are several stem cell therapy trials happening in the US, as we speak. A cure for Cystinosis could possibly be a reality in the near future, something your parents could have only dreamed of when you were first diagnosed! It just goes to show - anything is possible!
Believe me when I say I’m still clueless - still floating around like a plastic bag in a breeze, but maybe that’s no bad thing. Friends have come and gone, but through each friendship, a lesson has been learned. You will still have a handful of good friends in the future, so lean on them, and have a good laugh.
To survive all of that, and live through a pandemic! I must be made of strong stuff. While the future may be unknown, be kind,
no matter what life throws at you!
Everything you’ve been brave enough to face is the reason I’m here now. So, thank you.
Lots of love, Joe.
(PS: You get taller.)
Written by Joe Rumney as part of our "Letters to my younger self" series
You can get involved with the RARE Youth revolution by finding us on Instagram @rare_youth_revolution and on Facebook @RareYouthRevolution
You can also find Joe on Instagram at @joescystinosisstory