Updated: Mar 4, 2022
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.
In this edition, the letter comes from our own youth co-ordinator James Brooks! James was diagnosed with Niemann-Pick Disease Type B when he was three years old.
This is James' LETTER TO MY YOUNGER SELF!
Young James I have so much to tell you.
Let us get first things first. Calm down, you will get taller. Stop worrying about it so much. Your younger brother will never outgrow you either which is a bonus.
I would also ask you to just calm down in general. You worry about a lot, and you really don’t need to.
You worry about a lot of things when you’re young. How short you are, how skinny you are, and probably most of all, how weird you think you are. You get some help with the whole height issue, although you might want to keep that fact a little quiet. It's not exactly glamourous, having testosterone injections.
You’re 24 now. And for the past 4 years you’ve been enrolled in a clinical trial to treat your Niemann-Pick disease Type B. Somehow you managed to balance being on a clinical trial for your NP-B with doing a bachelor’s degree and working part-time. You graduated with a 2:1, which is the second highest grade, so you didn't do too badly.
You’ve been through three liver biopsies. I can safely say that liver biopsies are by far the most uncomfortable thing ever invented, but they are worth it. The liver biopsies were part of the screening process for the clinical trial you are on, and thankfully you never have to have another one ever again.
After 17 years of waiting, you finally start being treated for your condition. Every two weeks you spend four hours hooked up to a drip.
I can offer one piece of advice for balancing university with your treatment: do not try to finish any university work whilst having your treatment. The treatment makes you lethargic and unmotivated, and the hospital Wi-Fi means you will never upload anything on time.
Good news is that now you no longer have to stay overnight at the hospital after your treatment. You don’t even have to go to the hospital for your treatment anymore, a nurse now comes to your house to treat you.
As you get older, you’ll also realise that NP-B has had more of an effect on your day-to-day life than you had thought. Falling asleep in class at school and filling up quick when eating are actually NP-B symptoms not just you being lazy and skinny. You can tell that to Miss Fish now when you wake up loudly in the middle of English and avoid a detention. This is partly because you find out more about your condition as you get older, partly because of the clinical trial, but mainly because as you grow older, you start paying more attention to that side of your life.
Younger James, you have a tendency to only address the rare disease part of your life when you must.
Most people don’t know you have a rare disease. This is a bad approach. The more you know about your condition, the more of your friends who understand about it and can support you, the easier life will get for you.
My final piece of advice for you young James is to just relax. You have great friends, a family that might be a little too supportive, and a future ahead of you that is only going to get better, so don’t worry so much.
Written by James Brooks as part of our "Letters to my younger self" series
To get involved with the RARE Youth Revolution, and this series, you can email our youth coordinator James Brooks at firstname.lastname@example.org