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 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, it is the turn of Katy Baker, a member of our youth team who suffers from Scimitar Syndrome. Katy is also the host of the podcast "My Rare Disease" where she allows patients, health professionals and advocates share their stories about rare disease and chronic illness
This is Katy's LETTER TO MY YOUNGER SELF!
24 years have gone by and you have managed to pack in so much into your life already. Even more impressively, you have packed so much into your life with a rare disease. You haven’t done badly so far and having Scimitar Syndrome isn’t always a hinderance, it can be tough but without it you would not be the person you are today.
When you were diagnosed, you obviously do not remember it, you were 10 weeks old but from having it explained by Mum and Dad, it was a really rough ride for everyone involved. From being really unwell to having a condition that only affects 1 in 100,000 people explained to them by medical professionals who were probably not 100% sure about the condition. At 10 weeks old you already had to show so much determination and strength.
Since then you've been to school, achieved GCSEs, an Extended Diploma, an Undergraduate and Postgraduate degree (hopefully!), was President of your University’s Trampolining Team, won the University of Northampton Sports Personality of the Year and had some pretty fab jobs.
There has also been a completely other side of your life as well which is pretty rough and that’s ok.
I can’t pretend that Scimitar Syndrome is just a physical diagnosis because it isn’t, it affects the heart and lungs but it has impacted many elements of your life. As well as spending time in hospital, it will have a knock on your mental health over the years and support will be needed but that is courageous, reaching out for help shows that you are motivated to help yourself.
Having a condition that is not well-known and having to manage it day-to-day is physically and emotionally draining.
I want you to know that there are hard times, but you are so loved and there are so many people supporting you. There are some key changes which can be a bit scary but please remember, it is ok to not understand the medical jargon and to ask questions because it does not just help us make decisions but also helps us emotionally, it’s really important.
Some key changes that I would really like you to keep in mind is transitioning from paediatric to adult services because that is a strange one, you may feel ready but you will probably get a few stares from older patients, let them be curious! Another key change is within education, there can be some tricky obstacles along the way - coming last in cross country because your PE teachers feel that you can still run a long distance, that can be difficult especially when you are going through your teenage years.
Gaining more independence at University and learning your limits now you are in a new place with new people learning the ways of the world is also a learning curve. Please go at your own pace and make sure you do not compare yourself to others, easy for me to say but those closest to you will stand by you no matter what.
Scimitar Syndrome is a kick in the teeth sometimes. It is confusing, sad, and frustrating but please believe me when I say your life would be completely different if you didn’t have it.
Somewhere you gained the confidence to create a film with an amazing charity which has given you opportunities to speak at events, be on charity youth teams, write articles and be a podcast host – I still now can’t get my head around that one. You have the opportunity to educate others about rare disease and meet some inspiring people.
When I say inspiring people, I am not exaggerating.
Firstly, family. I really believe that illness affects the whole family and I can’t imagine the fear they have had from learning how feed me via a tube, learning about my diagnosis and much more. Your closest friends because, although friendship with an illness can be a bit rocky, those closest to you will always have time for you. Do speak to them when you need, you will be there for them so you deserve support too.
Lastly, you are going to have some wonderful medical professionals like friendly lung function nurses, extremely knowledgeable cardiologists and respiratory doctors and people like Tommy, who you will not have met if it wasn’t for Scimitar Syndrome. Don’t get me wrong, you would rather not have the pain but Tommy is going to be a key person in your life, I can’t say enough how lucky you are to have a kind, supportive physiotherapist who is there for you every step of the way, truly going above and beyond.
You can do this, you’ve got this, because I know you will take it all in your stride.
Katy's podcast "My rare disease" can be found here
If you would like to be a part of our "Letters to my younger self" series, you can get in touch with our youth coordinator James Brooks at firstname.lastname@example.org