Hey there, I'm Aisha, but you can call me Aish. I'm 25 and embracing life despite living with the challenge of Morquio Syndrome type A, a real rarity. 🦓
Back in the day, I was hitting the books at De Montfort University, snagging that B.A (Hons) in Health Studies. These days, I'm not just kicking back; I'm a Guest Speaker at good ol' De Montfort Uni, dropping knowledge like it's hot. And yep, I'm also doing the patient ambassador thing, just like Tilly with Medics4Rarediseases! 🎤🎗️
So, if you're interested in what life is like living with Morquio Syndrome or what it's like to rep rare diseases, ask away! I've got plenty of stories to share. Oh, and you can follow me on Insta: @iiamaish, Twitter: @aishseedat, to keep up with my adventures too! 📚🎙️📸
I have what is known as Morquio Syndrome. It is Mucopolysaccharide Disease. This is a rare genetic condition that affects my bones including my spine, organs, and physical abilities. With this condition you are missing, or don't produce enough, of the enzymes that break down sugar chains naturally produced in the body. I live life as normally as I can navigating through as anyone would do however some days can be more challenging than others. Each day is different and I have to really listen to my body.
An interview with the brilliant Aish:
What are the challenges of living with a chronic illness?
I am unable to walk so I use a powered wheelchair to get around. If a place does not offer accessibility options I can feel restricted in where I can go which makes me feel socially excluded from society. I am in constant pain in my joints and some days I feel it more than others so taking rest days when I have to can mean that I am missing out on important events like weddings and meeting up with my friends. Coping with an illness is hard, when you're on your own and there is no one around you that seems to understand your struggles. This is mentally enduring. I have Psoriasis too which has flare ups on days this makes me want to stay at home and not face or embrace the world.
What life lessons being a patient has taught you?
Being a rare disease patient has taught me a lot in life. It has taught me how to advocate my needs and wants my whole life in a way that professionals can understand. It has taught me to be kind to my body especially since November where I have had to take a step back from certain things to give my body rest and use my energy wisely and only where I am able to. I have learnt to be able to say NO when I feel out of my comfort zone. Being a patient can be gruelling but it has helped me become more mature and sensible when making decisions about my life.
How has your illness affected your education?
I have successfully completed all parts of my education, though there were months or days where I had become quite unwell and hospitalised for long periods of time. It did not stop or hinder my dreams of wanting to study further. I have always been a go-getter.
How has your illness affected your career?
Due to my physical disability and illness, my career has been impacted largely. Up until recently I was able to work part time, however due to my illness and me feeling frequently unwell; having sick days as no two days are the same and also having frequent hospital visits it has meant that I was unable to commit to structured hours. On occasions, I found most businesses and organisations were not accepting of this and could not accommodate my “reasonable adjustments” That said I now work as an advocate at my own pace and time, allowing me to take rest and care when required.
What is your personal experience of interactions with medics?
Having a rare condition, interactions with medics have had both positive and negative experiences. It's very important that medics have the knowledge and understanding of the disease, that's why I prefer seeing my metabolic consultants as they are fully equipped to support me and understand the nature of my condition and how to treat it. Other medics who have no or little awareness of the condition which has meant that my family and I (when able) are having to explain my situation and condition.
How has being a patient impacted your mental health?
Being a patient has impacted my mental health in several ways depending on the news I receive. Having family and friends to support you through dealing with news is helpful as then you're not dealing with it on your own. I have huge faith that everything comes from God and that I should trust that everything will be okay eventually. I have this quote in my room which is from our Holy Book which says “With every hardship comes ease”, this helps me to keep me grounded from the time I wake up and sleep, it is my first and last reminder.
How has being a patient impact you socially?
Being a patient means that sometimes I miss out on having a social life whether it's meeting up with your friends for a catch up or traveling out of Leicester. These are things I can not do independently and have to rely on my family a lot. Other occasions have been affected at times, like attending friends or family's wedding. No day is the same with my health which means I am unable to commit to future events and last minute adventures.
Top Tips on patient life coming from Aish very soon, keep your eyes peeled! In the meantime, check out her great patient advocacy work Ig: @iiamaish & Twitter: @aishseedat.
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