Q&A with Gracie Taylor

Gracie is living with Silver-Russell syndrome (SRS) and is currently in her final year of a Biomedical Sciences degree, specialising in Pharmacology at UCL.

Q: When were you first diagnosed with SRS? What was the process like? What help and resources were available to your family at the time?

A: My family had somewhat of a working diagnosis from when I was around 6 months old all the way until I was 2. The process went from a clinical geneticist noticing some distinctive physical characteristics when I was a baby that then prompted a range of genetic tests to confirm their hypotheses.

Initially my family were offered access to the clinical genetics team in Edinburgh with any questions they may have. The charity was mentioned but due to such an large amount of new information upon my diagnosis this felt overwhelming and ultimately wasn’t something my family chose to access the support of.

Newborn SGA

Q: In what ways has SRS influenced your choice of subject and the direction of your studies?

A: I remember from a young age I was absolutely fascinated by the human body, as I got older and started to choose my subjects for my exams in secondary school I was focused on trying to get into medical school. This was definitely motivated by my experience as a patient. I knew if I was going to be a doctor I wanted to work in paediatrics to offer support and reassurance to other children having to spend a lot of time at hospital appointments like I had.

Eventually I realised that a career in medicine didn’t actually align with my interests, I was far more stimulated by the idea of learning about the theory of human biology and how all of the areas of study within medical science interact (genetics, pharmacology, neuroscience etc) so based on this I decided to apply to study Biomedical Sciences at university. I would say that SRS definitely provided the initial inspiration for where my future career could lead and I very much use it as my drive to make a difference in finding solutions for patients.

SGA - Small Gestational Age

Q: What ambitions do you have for when you graduate?

A: I have always been very career driven so my main focus is looking for graduate roles, hopefully within the pharmaceutical or biotechnology sector however, I am definitely open to pursuing some of my current academic interests at a postgraduate level. Recently I’ve tried to focus more on key attributes I want in my career as opposed to landing on a specific ‘dream job’ job title. I know that I will find the most fulfillment in a career that places high importance on connecting with and educating people.

One of the motivations that SRS has given from me from a career point of view is a desire to make a difference in some shape or form and prove to both myself and potentially others that a diagnosis doesn’t necessarily limit your potential to achieve.

Q: What sorts of challenges does living with SRS bring to your day-to-day student life?

A: University life is hectic and particularly in London where the student and young professional cultures do blend into one another, I can find myself suffering with chronic fatigue fairly often. I feel particularly lucky living in London that the public transport options are vast so as a city it is very accessible and I rarely find myself having to walk too far. I live a very independent life and now being in my final year I have a really established support system around me at university. My biggest thing that I find myself having to manage is not always being able to predict when my chronic fatigue is going to hit me, I have numerous adjustments in place with the university wellbeing service that ensure this doesn’t put me at any disadvantage however, I definitely feel frustrated sometimes that I can’t do as much or I need to take a rest day. I try my best to check in with myself and how I’m feeling and then try to plan my weeks flexibly.

Q: Do you remember how old you were when you first understood you were affected by SRS? What was that experience like? Did you have a sense that you were different to your peers?

A: I think I always had an awareness that I was a bit shorter than my friends and had to go into hospital fairly regularly and they didn’t have to. I’m not sure on the exact age I would have been but my earliest memory where I remember feeling different was when I was in primary school, probably aged 5/6.

In my first year of primary school, as a class bonding activity we were asked to stick a coloured strip with our name drawn on to the classroom wall at our height. I vividly remember stepping back and realizing how far below my peer’s my sticker was. I don’t remember exactly what my initial emotions were but that was definitely the first experience that I can remember feeling different to my peers. As I’ve gotten older that sense of feeling different definitely sticks with me and is something I have to work through in my head when I’m in a new environment.

Q: Have you encountered many misconceptions about SRS in the general public? If there was one thing you wish everyone could understand about the condition, what would it be?

A: I think there are quite a few misconceptions following someone from the general public’s initial impression of me however, it’s hard to identify misconceptions about SRS due to the condition being so rare and most member of the general public wouldn’t have heard of it. When I was younger, due to being smaller most people definitely assumed I was younger than I was, as I’ve gotten older and facially matured this happens a lot less. However, I find that people do stare sometimes in public but it’s something you get used to.

I would say I have a few main things I wish people knew and are often the first things I tell people as they get to know me: one is the fact that my height really isn’t the aspect of my condition that impacts me the most. Yes I do get a few stares, find it difficult to reach things but the thing I struggle with the most is my chronic fatigue. Another massive point is that people do like to put me under the ‘dwarfism’ umbrella term, which absolutely in the right context is correct due to me being short in stature, however I do think many people expect me to have had the same experiences as someone with achondroplasia, a form of dwarfism with far more public representation and for the most part this simply isn’t the case. Finally, I genuinely don’t mind being asked a question about my condition if it comes from a place of genuine curiosity and is in an appropriate situation. In my experience giving people a little bit more knowledge is only a positive thing!

Small Gestational Age

Q: One of the things that can come with living with a rare condition is feeling as though you are expected to publicly ‘represent’ it. Is this something you find frustrating, or do you enjoy the opportunity to educate people (or both!)?

A: I’ve personally never found this frustrating, in fact I feel extremely grateful to be in the position and comfortable enough with myself and my condition to share my experiences. By talking about my experience in the context of offering advice it gives me a perspective that allows me to process some of my thoughts and feelings about my experiences in a more neutral way. I find being able to share my stories, hopefully offer some support to individuals affected by the condition and also educate those who aren’t as familiar with SRS to be incredibly cathartic.

I think we often talk about representation on a larger scale like in the media or within large corporations however, very rarely is it discussed on a more personal level. The idea of walking into a room and feeling like nobody looks the same as you is an important one to address when talking about representation. On a personal level, sometimes I can really get in my own head about this but more often than not I use it as my motivation to go to events as I always think maybe I’ll make someone else in the room feel more comfortable to be there.
I would absolutely love to see more people who look like me on adverts and in films but smaller scale representation is far more important for giving people the confidence to enjoy their everyday lives.

SGA - Small Gestational Age

Q: How did you first come to be aware of the CGF? From your perspective, what do you think is the most valuable aspect of the charity’s work? Are there any areas on which you think the CGF should focus more?

A: I personally first became aware of the charity when I was involved in an event with the University of Edinburgh’s Institute of Genetics and Cancer titled ‘Shining A Light on Silver-Russell Syndrome.’ Myself and my clinical geneticist Professor Mary Porteous delivered a Q&A with one another and then representatives from the CGF (Chair of Trustees Jeff Bolton and Medical Advisor Dr Emma Wakeling) shared some of the charity’s work with the audience.

I would say the most impactful work the charity does is creating a space where families can access support and ask questions that has a community and more relaxed feel to it. Currently the charity really does go above and beyond for families and patients with growth conditions however, the main thing I think would be great is if there was a way they could offer a platform in which young people could talk to each other more informally. I know this isn’t for everyone and I think even I would have been nervous to talk about how I felt with someone I didn’t know, however many young people often feel more comfortable talking to someone they don’t know as well.

Q: What piece of advice guidance would you give to a young person living with SRS? And what would you say to the parents of a child in the process of being diagnosed?

A: There are so many pieces of advice or even just reassurance I feel I could give particularly when I think of my younger self so I’ve narrowed it down to 3:

  1. It’s okay to be frustrated and wonder if it would be easier to not have SRS but don’t dwell on it and give yourself a hard time for something you can’t control. The reality is that most people have something going on, I really try my best to focus on the things that SRS makes me appreciate.
  2. Make sure you stay in touch with how you’re feeling, whether you like to write your thoughts down, talk to a close friend or just take a moment to reflect every so often it’s really important especially as you move through the big milestones of young adulthood.
  3. This last piece of advice is particularly directed to my younger self; please don’t be afraid to take up space just because you don’t see anyone who looks like you doing the same. If you have something you want to achieve, you are more than capable and deserving of the opportunity to chase after that.

In terms of advice I could give to parents of a child, I asked my mum what she thought and from everything she suggested this was the piece of advice she would give that resonated most with me. It’s really important, particularly in the early days, to take everything one day at a time as it will feel like a lot of information to take in. You need to recognise that it is a life changing diagnosis for the whole family/ your child’s support network and it will affect everyone in different ways.

Focus on the positives of what your child CAN do and try to give them enough confidence to go out into the world. Make sure as much as you can to equip them with the tools to cope with the challenges of the world, as young people they have a world of potential to fulfill that shouldn’t be limited by such a diagnosis.

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