Challenges into Purpose

By Aisha Seedat

Living with a rare condition like Morquio Syndrome presents unique hurdles. Yet, my journey has turned adversity into a force for positive change and healthcare advocacy.

Graduating with a BA in Health Studies from De Montfort University in 2019 was a significant accomplishment. The university's inclusive and supportive environment was crucial for someone like me who uses a wheelchair and the support I received truly enriched my academic experience.

Returning to DMU as a guest speaker, to share my lived experiences, was also a turning point. It encouraged me to take up other roles such as a Patient Ambassador for Medics 4 Rare Diseases, where I engage with future medical professionals to share perspectives from a patient's point of view.

I also volunteer my time with Jamila’s Legacy CIC, an organisation that supports and educates communities and organisations in mental health and wellbeing. This work allows me to speak on matters that are important to me, such as living with a rare disease and the profound impact this can have on mental health. I have also had the opportunity to support Jamila’s Legacy at big events.

I am still continuing my work with De Montfort University as a guest speaker and have initiated the "Disability Dialogues", a podcast series that challenges stereotypes and prejudices. My message is clear: disabilities shouldn't hinder aspirations. Life may pose challenges but seeking help and prioritising our well-being is essential. I am grateful for De Montfort University's support, as it was instrumental in my journey and encouraged me to continually seek help when it was needed.

My journey emphasises that we can all turn challenges into purpose. Morquio Syndrome hasn't defined my potential; instead, it's fueled my determination to make a positive impact. Through sharing my experiences and advocating for inclusivity, I aim to create a world where everyone can thrive, regardless of circumstances. Challenges may come, but with determination and support, we can achieve our goals while prioritising our well-being.