Annaliese Howard is a talented illustrator who has very mild TSC and LAM (lymphangioleiomyomatosis). Annaliese shares her experience of the conditions and the challenges that can come with them, including its impact on mental health

My name is Annaliese Howard, I’m 23 years old and I have very mild Tuberous Sclerosis Complex and LAM (lymphangioleiomyomatosis). I was officially diagnosed with TSC in 2011 at 11 years old after begging my mum to find out why the other children at school were bullying me for the way I looked. I was diagnosed with very mild LAM in 2022.

Nothing was really suspected until I was about 3 when my mum noticed facial angiofibromas developing (that started as red freckles) along with white patches on my body. Doctors pieced these symptoms together along with a couple of little seizures I had as a baby and thought that I might have TSC. But, after a follow-up when I was aged 5, they ruled out TSC as I was developing physically and mentally as normal with no further seizures.

I am an extremely creative person and have been since I was little. I found my passion for illustration at the end of my GCSEs and decided to take Art & Design at sixth form and then further my studies at university in 2018, successfully graduating from the University of Lincoln in 2021 with an Honours degree. While I currently work part time in retail, I aspire to be an illustrator as a full-time career, aiming to secure a tattoo apprenticeship in the near future and to one day publish my own childrens books. I recently won the 2022 TSA Christmas card design competition with my Snowman & Turkey design which I am really proud of. Illustrating helps me focus and allows me to express my ideas and emotions to create art that other people can love and connect with.

Having this condition affects my mental health a lot. I suffer from high-functioning anxiety and depression which I got diagnosed with in 2020. Battling with the hospitals and GPs has been the biggest ongoing struggle with this condition. I have fought an awful lot getting appointments made, chasing departments, asking admin staff and consultants for feedback on test results. I have been ignored a few times when I ask for updates. This would be stressful for anyone, but when you have a condition like TSC, you can end up seeing quite a few consultant specialists for various parts of the condition and it can become quite overwhelming.

Although I haven’t had any major surgery yet, I have a large benign brain tumour (SEGA) that neurosurgeons have decided needs to be removed in the near future, so the anxiety of waiting to get a follow up appointment to see them again after an MRI can make my day a little extra stressful sometimes. I strongly believe that my mental health is the way it is primarily because of my health issues, but also because nothing seems wrong to the majority of people other than the way I look as I have no physical or mental disability. This can sometimes be awkward to deal with.

I would like others who have TSC or parents/carers of those who have loved ones with TSC to know that you are not alone and that a lot of people are going through the same emotions and hurdles that you are. If you have a passion for something then chase it – go to university to study your passion or apply for a job in your dream career field. You are just as worthy and skilled as everybody else. You can still live a full and happy life no matter how mild or severe your condition is.