Millie Power was diagnosed with Tuberous Sclerosis Complex when she was 11 months old. Millie’s experiences with TSC and her interest in better understanding the condition led her to an amazing profession as a children’s nurse. Here, Millie discusses her experiences of growing up with TSC, having surgery and becoming a nurse.

My name is Millie Power. I’m 27 years old, and I live in Petts Wood, Orpington, with my fiancé. I was diagnosed with Tuberous Sclerosis Complex after I first started having tonic clonic seizures. Receiving my diagnosis of TSC was a complete surprise to my parents, as nobody in my family had this condition. This made it difficult for me growing up at times as, whenever I was ill, I knew that no one fully understood what I was going through.

I always wanted to understand my condition more, as it felt so out of control. Due to this and some memorable nurses I decided to become a children’s nurse. I had an interest in neurology and neurosurgery, so when I qualified in 2015 I began working on a neurology and neurosurgical children’s ward at Great Ormond Street Hospital.

How Tuberous Sclerosis Complex affects me personally

Since I was diagnosed with TSC it has mainly affected by through epilepsy and having regular seizures. Once I was started on medication as a baby, I gradually stopped having tonic clonic seizures, but have always continued to have regular focal seizures every week. Now that I am older and about to get married, I am realising that TSC affects me more than I ever realised as a child. I am now going through lots of tests and doctor appointments to try and find my Tuberous Sclerosis Complex gene error. So far they have been unable to find where it is in me, and this is definitely affecting my mental health. As we all know, anyone with TSC can pass the condition on to their children, and that is a hard to come to terms with.

TSC: My inspiration for nursing

My diagnosis of TSC and epilepsy is definitely what led to me wanting to become a children’s nurse. My mum also inspired me, as she was a nurse her whole working life, and she was also a strong woman who I looked up to. My parents tell me stories of how, when I was first diagnosed with Tuberous Sclerosis Complex, medical professionals began apologising to my parents and they instantly began treating me differently. It was my mum who stood up and said that they should “treat the symptoms Millie shows, not define her as a condition.” I will never understand exactly what my parents went through receiving my diagnosis and adapting to life because of it, but I will forever be thankful to them for being strong, and for treating me no differently to my other siblings. It is because of their encouragement I became the nurse that I am today.

I decided I wanted to specialise in neurology and neurosurgery when I was a teenager. I had grown up with no-one fully understanding how lonely and upsetting epilepsy can make you feel, and I knew that if I had even just one person who understood, it would have made life more manageable for me. It was because of this I decided that my dream was to be that person for other children and young people with epilepsy and Tuberous Sclerosis Complex.

My experiences of surgery

In July 2020, I went through epilepsy surgery and it is safe to say that it has changed my life for the better. When I was a child, my parents and I were never made aware that surgery could be an option. I used to be at work looking after patients thinking “it’s a shame surgery isn’t an option for me”. Then, in 2019, I moved to a different neurologist and she organised further testing for me (including things like EEG at home, and neuropsychologists). They found that all my seizures were coming from a specific area of my brain. This led to me meeting a neurosurgeon in October 2019, who suggested having a temporal lobectomy. The build-up to meeting the surgeon was very emotional – my biggest worries were how it would affect me and my career. I had a wonderful partner and my dream job, what if this would be affected by surgery?

At this point I was having 2-4 seizures a week. I walked into the meeting with my surgeon with lots of questions and if I’m honest I was planning to say “Thanks, but no thanks”, as I was so worried about what I could lose. However, my surgeon made me feel so safe, and reassured me that it wouldn’t affect my ability to be a nurse. For the first time in my life I felt myself putting what I wanted first – suddenly the life I had always dreamt of could become a possibility.

The feelings I felt before and after surgery have been very mixed. First, I have felt happiness and hope for one of the first times in my TSC and epilepsy journey – I finally felt like it could be possible to not have to plan my life around epilepsy. This has also shown me that epilepsy is a big part of my identity. Without epilepsy I may not have become a nurse. It made me think “Who am I without epilepsy?” This is something I am struggling with post-surgery – I am not someone who hates epilepsy. In fact, what I’ve done with it and in spite of it are some of my biggest achievements in life. However, it is hard to process the idea that I feel lost without seizures. It was seizures that made me feel down, exhausted and angry, but epilepsy has made me who I am. I am proud to be someone with epilepsy!

My recovery from surgery

I am lucky enough to be writing this having had a really positive recovery from surgery. The beginning of my recovery was spent sleeping a lot. I wasn’t able to bend down or do any day-to-day activities (like cooking, washing etc.) for around 6-8 weeks. To help me stay positive and help my mental health I started doing yoga at home in the morning. I found it helped me get into a positive mind space. In no way has my recovery been perfect – the area of my brain that was removed helps control mood and speech memory, and I have really struggled with anxiety during my recovery. My seizures mainly came at night before I went to sleep, so I now find myself getting anxious every night before bed. After years of having seizures it is hard to not still expect one to come. Due to this anxiety around sleep I now listen to a meditation app each night, otherwise I find I don’t sleep well at all.

At the beginning of my recovery, I would get emotional very easily, and sometimes it would come out of nowhere, which was hard to process and explain. I also forget some uncommon words. The difficulty is that you don’t know what you’ve forgotten until you trying to think of it! I still sometimes feel that the word is on the tip of my tongue, but I just can’t find it sometimes. All these side-effects will improve over time, but as I begin to feel more like my old self, they are becoming frustrating. I am still quite tired at times and need to rest after some activities, but my recovery is definitely going in the right direction. The best part of my recovery is that I can currently say that since surgery I have been seizure free. This is a sentence that I never thought I would ever be able to say in my life and that has been the best gift of all.

Roadblocks and moments of celebration

Throughout my nursing training and career there have definitely been a few roadblocks, but also many moments of celebration. As a student nurse I remember initially struggling with shift patterns, as I worked both days and nights as well as long shifts. Whilst I was getting used to this way of working it definitely increased my seizures, but as it was my dream job, and as I always got an aura before my seizure, I was able to ensure that my patients and I were always safe. Throughout my career I have been able to find what type of shift pattern works for me to decrease the number of seizures that I have. I am not yet back at work after surgery, but hopefully this will be less of a roadblock now I have had surgery.

There have been so many moments of celebration through my career. The main moments that I will always celebrate are the times when I have related to a patient’s situation and they have opened up to me and asked for support. Throughout my student and nursing career I have heard stories from patients who struggle with things like their diagnosis or taking medication, and when I tell them about my condition, they feel able to open up and talk to me. This has also led to me being able to direct families to the TSA and epilepsy charities. A personal celebratory moment was first stepping into Great Ormond Street as a qualified nurse. Growing up it was suggested to me by teachers and some doctors that I wouldn’t be able to become a nurse because of my condition, but I am proof that it’s important to follow your dreams. I felt proud just qualifying as a nurse – knowing I had achieved my dream job meant the world to me.

Explaining Tuberous Sclerosis Complex to people without the condition

I think one of the hardest things to explain to people who don’t live with TSC is how it affects every part of your life, even if it’s not visible. It’s hard to comprehend that I have a condition that has the potential to get worse whenever, and as you get older there are more worries to add to the pile. As someone who is mildly affected with TSC it is harder for people to understand that those risks are always there. People have always seen my only issue as epilepsy and seizures, but as I get older my worries include how I can safely have children without passing on TSC, or if the condition will spread further to other organs. These things are sometimes a really big struggle, on top of everyday adult worries.

Looking forward

It has been six months since my surgery and I am still seizure-free, which is such an exciting feeling. Throughout my recovery I have grown so much as a person and I am learning who I am without seizures. This is such an exciting feeling and for the first time in my life nothing feels impossible. I never realised how much seizures controlled my day-to-day life, whereas now I feel like I have been able to take some of that control back. I will be returning to work soon as a paediatric nurse. My hope is that if my seizures stay controlled, I can finally focus on my dreams of getting a promotion and of one day being a specialist Epilepsy Nurse for children, helping children who were like me.

I am getting married in September 2021, so I am very excited to start a new adventure with my partner. As part of our journey for starting a family I have recently agreed for DNA samples of mine to be sent away, to try and distinguish which TSC gene is affected for me. My hope is that, with an answer to this, we can ensure I don’t pass on this condition to my children.

Tuberous Sclerosis Complex community

As someone who was diagnosed with TSC at a very young age and have not had another member of my family with it, I want everyone to know that you are not alone. This can be a tough, difficult journey and sometimes it can feel impossible, but I want everyone to know you are all strong, amazing individuals. Whether it is you who has TSC or if it is a loved one, you are all incredible. Through growing up with TSC and going through surgery, the biggest lesson I have learnt is it’s ok to not be ok. It is easy to think you have to push on and keep going because that’s what people expect, and you want to act as ‘normal’ as possible, but it’s important to accept we are all different, and that for that we are amazing.