Welcome to Women in RARE: Next Gen. Here, we shine a spotlight on female rare disease advocates of the future. First featured in the Women in RARE edition of RARE Revolution Magazine
About you
I am Zainab Alani and, at first glance, I would appear to be a carefree 20-year-old student. However, beyond that facade, what you cannot overtly see is that I am a young person battling the rare, incurable autoimmune condition generalised myasthenia gravis. For almost a quarter of my life, I’ve been relearning how to live as full a life as possible whilst combatting a condition which attacks my muscles, making an exhausting chore of even the simplest of tasks. Adaptation is not a choice but, rather, is a demand of the lifestyle for those challenged with rare conditions. Every time I am knocked down, I rise up stronger. The foundations I owe my steadfastness to are my family and the rare community. Now, to give back to the latter, I am zealously charging the way forward and using my voice to advocate for a fairer world for the rarer collective.
Your biggest motivation
My biggest motivation is undoubtedly my family. At the inception of my rare disease journey, I had lost the Zainab I once knew to the all-consuming fear and uncertainty of the “rare disease” label. However, my family refused to let that version of myself fade away; they fostered my spirit and restored within me a version of myself that was stronger, unstoppable and more resilient than I had ever known. My mother unashamedly and unabatingly fought for me when I was voiceless; she was undoubtedly the sole reason that a rare condition ever surfaced as a differential. My father helped me see the light that awaited at the end of the most desolate path in my life, when I was blind to any form of hope; he guided me out from the darkness to the brighter person I was to become. My sister bravely and selflessly embodied the role of the protective elder sibling; she shielded me from the negativity of the world that my rare disease plunged me into.
My brother helped me laugh and find joy; he brought light at the bleakest points when my condition and its treatment stole the laughter out of my soul. Their individual actions came together synergistically to raise me up and out of the dark and isolating world of being siloed by the rare label. Thanks to their support and belief, I developed an armoury of self-determination within myself such that, even though I have been built up and knocked down between trials and tribulations of failed and successful treatments, I have always learned to pick myself up again.
Your greatest achievement
My greatest achievement to date was undoubtedly winning the 2021 International Student Voice Prize and going public with my story, which I had kept private for almost three years. In all sincerity, entering the competition was more of a cathartic than competitive experience, whereby my main goal was to be able to release the pent-up anger and distress that I had kept bottled up for far too long. Yet something awaited me, beyond that simple catharsis, and winning the competition appeared to be that final spark required to ignite the confidence that my family had unlocked within me. That simple essay was my saviour; it put me back in touch with the confident, and optimistic Zainab I once knew before my diagnosis and conveyed that I had a renewed sense of purpose. That purpose was to support, raise and uplift others, like myself, facing adversity in the form of rare conditions. Now, I unapologetically strive towards those goals of equality. Alongside my sister Fatima, we co-founded the rare disease society RAREAware Glasgow at the University of Glasgow with the very goal of advocating for not only awareness but also understanding about the impact of rare conditions. I will admit, however, that despite my achievements there is often an internal struggle—how do I persevere with my advocacy, maintain my positivity and keep up momentum when so little change appears to be reflected in policy? I later found the answer in the form of messages from young people on my social media platforms, who were reaching out to thank me for giving them a voice and hope when they, like me, had no one in the same "rare" position to relate to; now, even if my advocacy helps just one person, I know that my work will have been valuable.
What's next to strive for?
I soon realised that rare conditions—too many—take the guise of an issue which is only pertinent to a limited few. However, the deeper I delved the more I realised just how prevalent these purportedly “rare” conditions are. Moreover, as someone battling a rare condition which is not overtly obvious to those who do not know me, I realised the danger of external judgement and perceptions. My next goal is to strive for greater recognition and respect for “hidden conditions”; just because others cannot see my immune system destroying my muscles does not make my condition any less real or grave than a visible condition. I am fighting for equality for all, and that equality must be decided by those battling conditions and not external policymakers. We who battle the odds and overcome the burdens must be the ones to set the standards of our ability. Too many times have I received dismissive looks when using services designated for those with health conditions, simply because myasthenia is “hidden”. It is not hidden from my family who see when I struggle to keep my eyes open in the evening. It is not hidden from my colleagues when it is apparent that I cannot find the strength in my own limbs to carry out basic tasks. It is not hidden from my doctors when it is clear that my swallowing and speech are impaired. I should never feel the need to justify my hidden condition, and neither should anyone facing adversity. I will strive, purposefully and steadfastly, towards a world where visibility is not a measure of ability.
Advice to other-up-and-coming advocates
If I could advise others, or even my younger self, I would utter two simple words:
Don’t stop.
Looking back, my life was on hold in many respects. I couldn’t take part in physical education because my muscles were rapidly weakening; I couldn’t sit beside others in class as my immune system was severely vulnerable with high dose medication; I couldn’t do the normal things a teenager should be entitled to because I was suddenly at risk from lung failure, osteoporosis, diabetes and countless others threats, as a result of both my uninvited condition and the unwelcome side effects of treatment. But I never stopped. Despite the inconsiderate comments about my moon face due to steroids and the silent judgement of others at school from both staff and students, I persevered. Yes, I struggled. But I never stopped. I had a future and dreams and aspirations and hopes and goals and I didn’t want to be stopped. Never let your condition consume you; some days I felt inconsolable, unsavable, irreparable, but my family always guided me back to the person I was and the stronger person I was yet to become. To the rare warriors out there starting your journey, please remember this one sentence that I wish I could go back and tell my younger self: you must choose to believe that you have a rare condition but that it does not have to have you.
The tide will turn for the rare disease community when...
The tide will have turned for the rare disease community when we no longer have to justify our importance. When I no longer have to explain that I am a patient rather than a statistical rarity to be marvelled at, I will know that we have instilled a new perspective into healthcare professionals. When I no longer have to battle against ingrained and detrimental adages about horses and zebras, I will know that we have loosened the reins of students’ one-track thinking and unlocked new horizons. When I hear rare diseases being referenced to without a flippant aside about their perceived infrequency, I will know that we have created a tidal turn in medical education. A new school of thought is coming, a new generation is upon us and a new wave of rare revolution is evolving our world into one which will facilitate a fairer and more equitable environment for the rare community.
Socials
Instagram: @themyasthenicmedic