Zainab - Raising Awareness for Myasthenia Raising awareness for Myasthenia: https://instagram.com/themyasthenicmedic I would like to share the story behind the smile you see in the above photo. When I was younger, I was undoubtedly one of the most energetic and bubbly children you would have ever come across. I was known by all of my family, friends and teachers as the “smiley girl” as, come rain or shine, I was always smiling. But suddenly, when I was 15 years old, I wasn’t able to keep my eyes open past 10am in the morning. I wasn’t able to walk down the stairs without resting on the couch afterwards. But above all, I wasn’t able to smile. My smile was replaced with a snarl. I would try to smile but only a grimace would appear. I felt scared; I felt lost; I felt out of my depth. I didn’t know what was happening and why it was happening. In such a small space of time, the Zainab I knew was gone. No matter how much effort I put in or how many times I tried to smile, I couldn’t bring her back. I went to my local optician to see if they could help me with my ptosis (drooping eyelids). And he laughed when I showed him a picture of my drooping eyelids. If it wasn’t already destroyed, my confidence was completely obliterated. This drove me even further into darkness and distress and I didn’t want to seek any more help and certainly did not want to face another healthcare professional. I had gone to the GP with my mum and it was actually my mum, who is a GP herself, who suggested I could have myasthenia gravis. But my GP said that no, no, I was too young to have MG. So away home we went, and once again we returned home more confused than we had left. Weeks passed and I was ping-ponged between A&E and back home until I was finally believed by a registrar. He was the first person to take us to the side and showed true concern when he too suggested I could have MG. Suddenly, I was being put through MRI scanners, CT scanners and having to undergo lumbar puncture procedures (a needle in the spine). I had to undergo all of these invasive procedures before being offered the simple blood test that would confirm my diagnosis. For a bit of background, at your muscles there is a neurotransmitter called acetylcholine that attaches to acetylcholine receptors on muscles to allow you to move, walk, breathe and smile. The blood test detects anti-acetylcholine receptor antibodies and should be < 5×10-10 mol – in other words, normally, the number of those antibodies should be so small it was as if they didn’t exist. My result was overwhelmingly positive: 14.0 mol. Unfortunately, this wasn’t the end of my arduous diagnosis journey. I was sitting in my room, it was a Friday afternoon, I was looking forward to the weekend, when I received a call from an unknown number. “Hi is this Zainab? This is Dr X. This is to tell you that your antibody test was positive and you have MG. You can pick up some medication at the hospital.” Of course, this isn’t exactly how it went but the fact that I was delivered a lifelong diagnosis over the phone, alone, at the age of 15 still shocks me to this day. Since my diagnosis, I have been on countless medications, and endured a battery of side effects with each different drug, including Pyrodistigmine Bromide, immunosuppressants and the most toxic for me, steroids. They caused weight gain, moon face (rounded face), hair loss, acne and every unwanted side effect imaginable. I’ve had major surgery in the form of a thymectomy to remove my thymus as part of my management plan and undergone biologic therapies, while sitting for 10 hours in a hospital room attached to an IV drip. I’ve gone through a lot more than you’d expect of someone my age and undoubtedly matured a lot more quickly as my decision-making capacity went from a typical 15 year old’s dilemmas of what to buy whilst shopping to suddenly life impacting decisions such as, “am I prepared to go through with this surgery?” I have to accept the difficult burden that treatments might not always go as planned and desired outcomes may not be as I’d hoped, which – no matter how much I prepare for each time – hits harder with each blow and failed therapy. I’m on daily medication, morning and night, and am on a lifelong battle with this condition, generalised myasthenia gravis. Beyond the MG battle, I now acknowledge that there was likely an inner battle too; I did not want to accept the diagnosis. I couldn’t fathom it; I couldn’t understand why it was happening to me; of all 15 in 100,000 people – why me? This was the question that kept surfacing. If I’m honest, I don’t blame myself for how I felt – who could? I was a 15-year-old with my whole life ahead of me. And suddenly, MG was slamming doors of opportunity shut right before my eyes. I wasn’t blind to this; the long-term impact and knowledge of MG’s effects quickly set in and this feeling of being robbed of so much in so little a space of time was crushing. Utterly crushing. I have always been a curious person and I love to learn so naturally, I researched and researched as soon as I had a confirmed diagnosis. But this only made everything worse and sent me spiralling downwards – “progressive muscle weakness”, “difficulty breathing”, and worst of all, “incurable”. No cure; I had this for life and I needed to face it. But at age 15, I couldn’t. And for almost 3 years, I didn’t. I tried to pretend I could do everything I once could; I tried to keep up PE in school and even the public speaking I loved doing. But more serious symptoms began to set in like nasal speech due to weakness of muscles in my throat and my weakness rapidly progressed from ptosis to whole body weakness to the point that I could not bury it any longer. Things worsened so quickly that my surgery was brought forward 6 months to December 2019 when I was 16 years old. I struggled to accept my diagnosis. I never mentioned it to anyone unless strictly necessary for almost 3 years; this translated to only my immediate family knowing about my diagnosis; my mum, dad, brother and sister who are the sole reasons I managed to make it through those tough first few years of my diagnosis. Without them, I know for certain that I would not have coped. They supported each decision I made and helped me see the light in the darkest moments. I never spoke of my diagnosis not for fear of judgement, but for the need of explanation. MG is rare – the likelihood of people knowing about it was vanishingly rare too, and I wasn’t prepared to explain it to everyone when I myself had not yet truly understood the impact it would have on the rest of my life. However, myself, my sister Fatima, and others at the University of Glasgow have set out to change this – we founded a rare disease society, called RAREAware Glasgow (https://linktr.ee/rareawareglasgow) for which I am acting as the President with my perspective as both a medical student and MG patient, and are aiming to raise awareness for rare diseases, including MG. We are also raising awareness about the impact on families, parents and carers as this can often be overlooked and I know that without these support networks many of those with MG would find everything much more difficult, myself included. Personally, I also raise awareness for MG through my social media channels to show what life is like behind the scenes for a young person living with MG which you can keep up with here: https://www.instagram.com/themyasthenicmedic/ As MG is a hidden condition, many do not know when looking at me that I battle a rare incurable autoimmune condition that causes a myriad of symptoms which affect me in every way imaginable and that I’ve been through and am still going through a multitude of therapies and procedures to get to me to where I am today. Through my page I try to exemplify this and illustrate that, although MG can be managed, you never know when a flare up or exacerbation can occur and I also mention what others can do to help. I hope by doing this, I can help increase understanding surrounding MG and reduce stigma so that no one has to feel the way I felt at the start of my diagnosis due to a lack of understanding from others. I am also part of the university of Glasgow’s Formula Student team, UGRacing and have the role of Charities and Outreach Convener. Now that I am open about discussing my diagnosis and raising awareness for MG, I suggested we support myaware this year as our chosen charity which we as a UGRacing team have enthusiastically taken on and are doing a fantastic job of. Make sure to follow UGRacing on social media and visit our UGRacing x Myaware JustGiving Page to keep up with our fundraising efforts: https://www.justgiving.com/fundraising/university-of-glasgow-racing-ugracingxmyaware Unfortunately, I still have active symptoms however I do not let this stop me. MG doesn’t have me; I have MG.I have accepted that the Zainab I know will never come back. But I have embraced the new me. Sure, she doesn’t have the same acne-free skin and her hair isn’t as thick but her spirit is stronger and she is scarily determined. I still have bad days. I still have days where I can’t type my lectures because I can’t straighten my fingers. I still have days where I want to smile but I can’t. I still have days where I can’t even watch a TV show without lifting my neck up to compensate for the ptosis. But I wouldn’t change anything. Because MG isn’t who I am; it’s only part of me. I am still determined. I am still myself. I am still Zainab.