Fighting the Deceiving Label of ‘Rare’: Zainab Alani, Fourth Year Student at University of Glasgow School of Medicine and Rare Conditions Advocate

Lindsey Smith

Hi, I'm Lindsey Smith welcoming you to Raise the Line with Osmosis from Elsevier, an ongoing exploration about how to improve health and healthcare. To mark International Rare Disease Day, we're going to introduce you to a remarkable young woman, Zainab Alani, who is not letting her rare condition stand in the way of her becoming a physician. 

Zainab was diagnosed at fifteen with an incurable autoimmune condition, Generalized Myasthenia Gravis, also known as MG. Despite battling muscle weakness, fatigue, and other challenging symptoms, Zainab is in her fourth year at the University of Glasgow School of Medicine, pursuing a specialization in critical care and perioperative medicine.

She is also a rare conditions advocate who has published articles discussing her experience and worked with regulatory bodies to help improve care for people with the condition. We first became familiar with Zainab when she stepped up to share her story as part of our Year of the Zebra campaign, which is designed to raise awareness of rare conditions among healthcare students, professionals, and the public. 

Thanks so much for joining us today, Zainab.

Zainab Alani 

Thank you for having me.

Lindsey 

As I mentioned, we first got to know you from the Year of the Zebra campaign, which Osmosis launched to raise awareness on rare conditions. So, we go a little bit back with you and we want to open up the conversation today with you taking us through your journey with Generalized Myasthenia Gravis. Can you tell us a little bit about when you first noticed that something could be wrong?

Zainab 

Yes, so it was just after my school exams. I was about fifteen years old and you know how it is with exams, we try our hardest and then afterwards we feel a little bit run down, maybe a little bit tired. So at first I just brushed off. I didn't think it was much really, and I remember one evening, I was sitting watching TV and I had my head cocked back and just leaning a bit back more than usual but it wasn't actually me that picked up on this, it was actually my sister.

And she said, “Are you a bit tired? You're leaning back.” At that moment, I didn't really think much of it, but as the weeks progressed, I got more tired. I was sleeping-in a lot more and although I was a teenager, I'm usually quite an excited, energetic person, that gets up and goes with the day. But I was sleeping-in more and even when I woke up, I just didn't feel well rested. This kept going on and the tiredness became something more sinister. I started waking up with droopy eyes. I couldn't reach out to pick up a glass of water. Even when I was at school, my legs felt so weak that walking between classes, even that simple two minute walk, really tired me out. 

I remember being at home one day and receiving a call from my mum, who's actually a generalized practitioner -- which here in the UK is someone who works in medicine and is the first point of contact and should have a broad general knowledge of most things. I remember my mum calling me and saying, “Zainab, are your symptoms worse at the end of the day?” And I hadn't really thought much of it and I said, “Actually, yeah.” That was the spark which my mum, in her mind, she'd locked on that this could be myasthenia. Although very rare, she was actually the one who picked up on it.

Lindsey 

Wow, and so lucky to have a mom who picked up on that. 

Zainab 

Crazy.

Lindsey

Can you take us through once you did get that diagnosis and what the prognosis is today and what the treatment plan is today?

Zainab 

Yeah. So as I said, I'm incredibly lucky that I had my mum really there as my advocate from the get-go and from the inception of my diagnosis journey. But despite having that support and that knowledge behind me, I was still neglected and disregarded by numerous healthcare professionals. I then went to my own GP with my mum and she expressed her concerns that, look, I think my daughter could have this condition and her concerns and my concerns were dismissed. She was told that she was just being an over-weaning mother and that I was probably looking into my symptoms and googling it too much. 

So I was sent home and my symptoms got worse, my drooping eyes got worse and I just felt more tired. Then my mum and dad decided that I was just getting really ill and it was time to take me to the A &E department (Accident and Emergency.) When I went there, I was equally dismissed. I was told that I was wasting time. I was told that I was just being a lazy teenager. 

I remember one day I went in on a Monday morning and it was my first day of what we call the fifth year of secondary school, so S5, and they said that I was just trying to get time off school. But being a medical student and having to be hardworking, that evidently wasn't something that I'd wanted to do. I really just wanted to be back with my friends in the classroom, just being that teenager that I had always been, but I just couldn't.

I was dismissed on multiple grounds, whether that be that my mum was worrying too much, whether that be I was a teenager, whether it was because I was a female and it was my time of the month, whether it was for my ethnicity and for lack of understanding, despite coming from a well-to-do background. There were so many grounds on which I was dismissed and really this intersectionality and this difficulty of multiple aspects of our personality and our background that come together to create burdens is something that I do discuss about as part of my advocacy work. 

Getting to that diagnosis probably had more hurdles than I would have ever expected. And a big pushback beyond all the individual burdens and hurdles that I've mentioned was just the fact that all these people dismissed myasthenias as a possibility because they had never seen a fifteen year old with these conditions. I had too many symptoms for it to be myasthenia or just people saying it's rare, she probably doesn't have it. 

So I think from the get go, once I look back, there were these small hints that people really were just dismissing rare diseases, maybe not on basis of lack of knowledge, but just because of that deceiving label of rare, because even though we're individually rare, collectively, rare diseases are actually common.

Lindsey

Yeah, and that sounds like such a difficult and frustrating journey to reach the diagnosis for this rare condition. I think your persistence and advocating for yourself and having your family advocate for yourself is really inspiring. Can you give us some more details on what MG is and what the typical symptoms are?

Zainab 

So, Myasthenia Gravis is an autoimmune condition where the body starts making little molecules called antibodies and they attack the cells and the receptors on your muscles. Myasthenia affects all the muscles in your body apart from your heart and your gut. But what's really important about that is that it means it affects all these small day to day muscles that most people take for granted. 

For example, when you wake up in the morning and open your eyes, that's your eyelids and that's muscles. Talking to people using your tongue and your voice box, that's muscles. Symptoms that I had were ptosis, so dropping eyelids from the weakness. I also had nasal voice changes and just a weak voice, so to speak. I hadn't realized at the time, but when I later got referred, I was told that this was all because my myasthenia was getting a bit out of control. If people with myasthenia go untreated and uncontrolled for so long, their lung muscles can become affected and that is really the worst point at which unfortunately some of my fellow myasthenia patients and colleagues have been diagnosed. 

If it gets to that point, patients then go into what's called a crisis and they might have to end up in a hospital and on a breathing machine just to help their body get over it. So a lot of the symptoms are quite subtle and people might not pick up on them at first and it could be as simple as having difficulty rising from a chair because again that's just muscles. So it's all these small little things, but when added up together, it has a profound effect on the patient.

Lindsey 

Thank you so much so much for sharing your experience with us. I'd to know how it is affecting you today in your day to day.

Zainab 

This also is another part of what I advocate for: myasthenia as a hidden condition. Many people look at me and even people inadvertently might say, you look like you're better. But what they don't see is the hidden day to day struggles. I had my thymus gland removed at the start of my journey in 2019. I've had various immunosuppressants. I was on really high doses of steroids and I had all the horrible side effects of those. I've been on so many medications and currently I'm grateful that I've been able to come down on those, but I'm still on steroids and immunosuppressants, which carry their own risks. For those with a medical background in the audience and even for the wider public, I'm sure people know that being on medication long-term isn't good for you. So these all have their side effects.

But on a day to day basis, I still get symptoms. So at the end of the day, I get droopy eyelids, which means I have to go to bed a bit earlier than I might want to. When I'm going out for dinner with friends, I have to be selective about what meals I choose as, for example, you might go out and want a big steak or something like that. But all these things take muscles and energy and things like that and that then retracts from really the social activities and social things that you're able to do.

It even affects things like exercise. When I was first diagnosed, I had to pull out from school activity and exercise in school because I just became so weak that it was becoming dangerous for my health. So, getting back into exercise and back into that form of wellbeing was something really difficult for me. But now I've integrated some light exercise and Pilates into my routine so that I'm still able to do things.

But the difficulty that I find in many fellow patients with myasthenia that I've discussed is just the aspect of people not understanding those subliminal struggles that maybe go unnoticed, but which we battle in the background. So from my experience and many others, it's just some small symptoms, be that hand weakness, or drooping eyelids that just get in the way of day-to-day life sometimes.

Lindsey 

Yeah, absolutely. I am in awe of your resilience and your ability to navigate it daily while also balancing school and many other responsibilities, which we'll get to in just a little bit. Can you talk about what your treatment plan is and if any new treatments or developments are on the horizon?

Zainab 

Yeah, of course. So as I mentioned, I was on very high doses of steroids. For those that don't know, this drug basically is a resort for doctors when they're not sure what's going on and they just give lots of these drugs. I've seen it myself at the end of a lecture when they don't know what to give, they'll say try steroids. They probably saved my life, to be honest, because I was at a stage where my voice muscles were weakening, I was really tired and I couldn't get up in the morning.

I got put on this really high dose and although it saved me from the effects of myasthenia, I did suffer a lot with other side effects, such as “moon face.” So my face became very round, which was obvious, and being in secondary school and among possibly some un-nice people, I got some unpleasant comments from some people, which was really difficult to deal with at the time. I also dealt with other things like acne, mood swings, things that are really difficult for someone who's already a teenager going through these things at that time. So, steroids were a big part of just getting me to a point where they could introduce other drugs. 

As I mentioned, I had a thymectomy, which is part of the management plan for a lot of younger myasthenia patients. This was moved forward six months because I rapidly declined so badly that the doctor said we have to do this quicker than we thought. The hope was that by getting rid of that gland that was causing problems -- maybe triggering immune systems in ways they shouldn't -- that they could maybe delay it. But unfortunately it didn't work for me. So I was then put on immunosuppressants, which I've been on for five years now, which looking back is actually quite a long time. But this is what I've been on since 2019. Beyond that, I had another drug which isn't licensed for myasthenia, but the doctors are encouraged to try. So I had what's called a monoclonal antibody called Rituximab and the aim of that was just improving my hand strength. Unfortunately, that didn't work either. 

But as you mentioned, there are new treatments on the horizon and we're quite lucky that a lot of the big drug companies are now looking into treatments for myasthenia. Some of these include things like infusions or injections and I've been put forward to some panels, but unfortunately, I've been unsuccessful in being able to use these new treatments. I think that's one of the big challenges for myself and many other myasthenia patients. There are new treatments out there, it's just getting to them that's the difficulty. Based on my own experience and many others, I know that these panels expect patients to have gone through every single available treatment, but as I'm sure many people can appreciate, having to exhaust all treatment options is exhausting on us really. 

It takes a lot of time. Over five years now, I've probably exhausted three possible drugs and there's many more options out there, so I'm not sure when I'll be able to benefit from these new drugs, but I do hope that in future I might be able to get off some of the seed oils or immunosuppressants and maybe try something new.

Lindsey 

Absolutely, and it makes me hopeful to hear about the ongoing research and potential new therapies, especially for conditions like yours and I know we're going to be hoping for continued progress. So, you've been very public about sharing your story, and I wanted to kind of understand a little bit more on why you decided to do so?

Zainab 

It's a really interesting story and I have the wonderful advocacy team at Medics for Rare Diseases and Beacon – which are charities here in the UK that help people and advocate for rare diseases -- to thank for that. It's important to note that up until medical school, I hadn't told anyone about myasthenia diagnosis. The only people that knew were my mum, my dad, my brother and my sister and I wouldn't change anything at that time. They were the only support I needed. They helped me through, they shielded me at times from what was really the bad about my diagnosis, and helped me see the light. 

But it was difficult because, as I mentioned, I received unpleasant comments from others in school about my appearance, which was secondary to the drugs I was on. I was being questioned about why I wasn't in school and why I was missing so much time. Even when I came back to school from my major surgery, I couldn't really carry my own bag around because of my surgical scars. My friends were there to help me, but they didn't know why. 

So, I remember being in my first year of medical school and I decided to enter a competition on writing an essay about a rare disease. I thought, “That's quite fitting. I've just been diagnosed with one.” And so I wrote this essay and most people don't believe, but it really was just an episode and time for catharsis. I let out all that pent up anger, all the feelings I had been having and just by typing them out and putting them on paper somehow helped lift that burden off my shoulders that I didn't really realize I had been carrying all this time. 

I submitted my essay, and about a few months later, I was sitting with my sister in the library and I got this email and it said, you've won this competition and here's a cash prize. Of course, emails are not very trustworthy so I looked at my sister, I said, “Do you think this is real?” She said, “You did enter it, didn't you?” And I said, yeah. So I checked into it and it was all real and I'd won this competition. Winning it really was the spark that made me realize I'm in a really privileged position as both a medical student and a rare conditions patient to advocate for other people because I have the knowledge that can likely change practice and I'm amongst the group of people that will be the next generation of clinicians treating patients, family members, and just contributing to wider community knowledge. So really, that was the spark of my journey, just entering an essay competition, which would be quite unsuspecting.

Lindsey 

Well, we're glad you entered and we're so glad that you shared your story. I think this is a really good segue into talking about you as a medical student and a rare condition patient as well. I’m wondering what kind of influence that maybe had in your decision to pursue medicine as a career.

Zainab 

Being a medical student has its challenges because there's a lot to learn and a lot to do and it always seems like we're very busy. As you mentioned, my diagnosis and notably my journey is what really was that final push towards me doing medicine. I had such a negative experience and up until that point -- although we hear stories on the news about how in the UK the National Health Service is struggling -- I hadn't really experienced that firsthand.

Prior to that, I'd always had positive experiences. 

But as I became the patient, and a regular patient at that, and engaged with other patients, I soon realized that this was quite a malignant problem in the healthcare system and this wasn't a one-off that I was experiencing. It actually made me quite sad because I have experienced good parts of the healthcare system and it felt a shame that such a large community was being dismissed for such a small reason of just having a rare condition and were really struggling at the hands of the healthcare system. So, I thought if I enter into the field and share my story that this could be something that can make a difference not only for myself but for the wider community. 

As a medical student, alongside my sister, we decided to set up a rare disease society called Rare Aware Glasgow. Basically we're a community of not only medical students but just anybody across the university that would like to get involved because we acknowledge that one in seventeen people in their lives will be affected by rare disease, whether that's they themselves, a family member, a friend. So we are just a really an open community where people can come together, discuss what it's like or just share opinions and ideas. 

We hosted some successful events such as a quiz night where it was a mix of general trivia and rare disease. Also other things such as our conference, which had some really great speakers and there were attendees from all over Scotland. And then we've hosted some other events online. As patient advocate, I have connections with patients, not only with myasthenia, but other rare conditions and we were able to host events on Zoom with these worldwide advocates talking to people at Glasgow, just wanting to share their experience and really creating that sense of community.

So I think since coming into medical school, myself, my sister and the community that we've built have really been able to see meaningful change. And this isn't only in the community, but we've also seen it reflected in our medical school exams where at the end of every year there seems to be a question on myasthenia, whether that's through her own work or whether that's something else. But we're just glad it's in there because I know that despite being an advocate, and a very vocal one at that, there are still some people in my year group who aren't aware of myasthenia. 

My goal is to not only make them aware of that, but just of rare conditions. It's important to know that we don't expect medical students or medical professionals to know every single one of the 7,000-plus rare disease. We just want them to acknowledge their existence and not dismiss them when maybe a family or a patient brings them up as a differential.

Lindsey 

I really liked hearing about how your personal experience with healthcare and education has kind of shaped your path and I’m so inspired by your advocacy organization with your sister. I’m just curious where our listeners can go to find out more about the advocacy organization that you founded?

Zainab 

Yeah, of course. Our handle on Instagram and most social media is @rareawareglasgow. Or if you go to my page @themyastheniamedic. I've linked it numerous times, so there’s lots of plugs for our society in there. And feel free to reach out if you want to establish something similar at your medical school or organization.

Lindsey 

Thank you so much for sharing that with us. So, because you have such a unique perspective -- you've been a patient, and you're now on the medical side of things -- what would be your bottom line message for health professionals in terms of providing care to patients with rare conditions?

Zainab 

I think my message would be if you're diagnosing a patient, think rare. And if a patient comes to you thinking they have a rare condition, believe it. Nobody knows a patient just like their family or they themselves. So whatever they suggest, don't dismiss it. Take it on board.

Lindsey 

That's really great advice for all of our listeners and future medical providers. I know one of your goals is to increase exposure to rare conditions within the medical curriculum. What kind of changes are you advocating for?

Zainab 

That's a really important question. As I mentioned, I don't want people to know the minutiae of every single condition because we understand that's unrealistic and doctors and healthcare professionals as it is already have a lot on their plate. So what we are advocating is just really to think rare and acknowledge that they're out there. Often when going through a diagnosis journey, doctors will draft up a list of differential diagnoses and we want doctors and healthcare professionals, once they exhaust that list, to not just stop there. Maybe extend that and think, “What if this could be a rare condition? What if it was that one line in the slide on my lecture? What if it is that case an old consultant told me they'd seen once but never again?” 

Because the important thing is that although rare, we're not impossible. We do exist and we're out there. The saying often goes, ‘when you hear hooves think horses, not zebras’ but we're here to fight that and say that, yeah, it could be horses most of the time, but zebras are there. We're zebras and we make up a substantial amount of the healthcare population. As treatments and conditions that once were a burden become treated and controlled through research, the conditions that will remain and yet to be treated will be rare conditions. 

So by facilitating this and promoting this message, we're really helping the medical and healthcare communities get that step ahead because we do know that rare diseases and rare conditions will only continue to increase as survival gets better. So we're here to help them get over that curve and we hope that they get on board with our message of thinking rare.

Lindsey 

It's such important work that you're doing...this advocacy work for rare conditions around the world, so thank you so much for that. So, you're in your fourth year of medical school today, which is already a very challenging journey on its own. How are you balancing it all -- the medical school, advocacy work and navigating life with a rare condition?

Zainab 

I often get asked this and I think it's really important to be transparent as an advocate. Having spoken to other advocates, we often do feel advocacy burnout. Last year, I'd really been working hard on the society. I'd taken up a lot of roles that weren't being fulfilled. I actually realized at the end of the year that I was probably doing detriment to myself and

because I wasn't feeling my best, I definitely wasn't serving my degree nor the rare community as best I could.

So at that point, I took a step back and just decided that I needed a bit of time for me to get things back in order. I also had something like that at the start of this year, as unfortunately I was in hospital. So there's these little things that it does remind you not to stretch yourself too far. As I mentioned, I use Pilates in my day just to break up when I'm feeling maybe I need a wee pick me up or I just need a break from what I'm doing. I'll just have a wee quick hour session and that just puts things back into perspective for me. 

And other things like just taking a step back, even thinking as difficult as myasthenia is, I always think that I'm so grateful to live in a country where I have treatment for free and have some of the most amazing treatment available at my fingertips when at times and at the moment in the world, we're seeing so many communities and rare communities as well -- which really breaks my heart -- without treatment or being denied treatment. So it's really something that I just step back and I always take that moment to be grateful for what I have. 

When I reflect on my journey and how far I've come, it really just helps me know that I've gotten this far and I can still do it. Because I remember at the start of my medical school journey, I had a really unpleasant experience with actually a high up member of the medical school and that's when I realized I still had so much work to do because I was being questioned about why I needed extra assistance or extra time and it just reminded me that if people so high up in this hierarchy still don't see rare conditions, I've got a lot of work to do. But then it reminds me that I'm not alone in this fight and I have a whole journey ahead of me and a whole group of advocates and by talking to advocates and seeing how they balance things it really helps me know what I should be doing, what boundaries I should set and not to burn myself out.

Lindsey 

Wow, we are just so inspired by you and all of the great work that you're doing and we can't wait to see what you're going to do next. So as you know, Osmosis is a learning and education company and we love to fill knowledge gaps. Is there anything that you wish we would create content on to educate future healthcare professionals?

Zainab 

Well, I think the Year of the Zebra campaign was really that gap that needed to be filled. When I went on the YouTube channel and saw all the stories that were being shared, I was really grateful to Osmosis for playing this part because I know amongst even my medical school colleagues, when we discuss what resources to use or even at the end of the session will be directed to possibly see this Osmosis YouTube video or try this on their website.

For such a renowned company and respected education platform to be platforming and discussing rare diseases and rare conditions...it actually gave me hope for the health community because I think in our world today, so much learning even over the pandemic was done online. So these resources that are freely available, including the Year of the Zebra videos and importantly, the ones with rare conditions advocates was such a huge step in the right direction.

I remember after the video coming out, I actually got several messages on my social media platform saying, I saw this video. I'm a medical student in say, for example, Aberdeen or Dundee, thanks for sharing your story. So this just shows that despite Osmosis being based far from the UK, they're doing some worldwide work. I know that that certainly would have been the case for other patient advocacy videos, because as soon as you type in something, you see what pops up first. And with Osmosis there and being such a trusted source, I think that really was really encouraging for not only myself, but other rare conditions advocates.

Lindsey 

Thank you so much for sharing that and we're very grateful for your support of the Year of the Zebracampaign. If you haven't checked out Zainab’s “I am a Zebra” video, we encourage you to do so. For my final question, what is next for you?

Zainab 

I think this is a really exciting question because this year in my medical school journey, I'm doing what's called an intercalated degree, so I have a tiny bit more free time on my hands, not loads, but a bit more. I was speaking to other rare conditions advocates and just other patients and I get a lot of messages on my social media platform, specifically from young people with myasthenia, thanking me for my page because they had no one to turn to. I see this as a common thread and a common message that I get quite often. So, I decided that this year -- and it'll be launching on Rare Disease Day, so the 28th of February -- I'm going to launch a platform for young people with rare conditions.

I really want this to be a global platform where people can come together, share stories, share ideas, and just really have someone there that understands. Because I thought if this is prevalent in the myasthenia community, I can only imagine that it's replicated and maybe even more so for people with ultra rare conditions. And so I really hope that by creating this community on social media, it'll create a spark that will then allow other countries to maybe form their own groups. 

I hope by just having one place where everybody can join, it'll just make them feel that tiny bit less alone because in my journey, and right at the start when I kept it so private, I think that probably was the most isolated I'd felt despite having such an amazing family. You just want someone who's also young, also in that condition who just understands the struggles.

Lindsey 

Well, we are very excited to see what this platform looks like for young people with rare conditions. We'll be sure to share more information on that when it's available. 

Thank you so much for being with us today, Zainab, and for sharing your story with us, and for the work you're doing to improve care and understanding for others facing similar challenges. I have no doubt that you'll continue to make a meaningful impact, both as a future physician and as a powerful advocate. 

Zainab 

Thank you for having me.

Lindsey 

Zainab's resilience, dedication, and advocacy truly embody the spirit of Rare Disease Day and the importance of raising awareness for conditions like MG.

To our listeners, I hope that Zainab's story serves as a powerful reminder that true medical excellence lies in looking beyond the obvious...to not just treat the common “horses” but to recognize, understand, and advocate for the “zebras” whose voices too often go unheard. 

Let's keep raising the line for rare disease awareness and working toward a more inclusive and compassionate healthcare system. 

Thanks for tuning into this special episode of Raise the Line with Osmosis from Elsevier. I'm Lindsey Smith. Remember to do your part to raise the line and strengthen the healthcare system. We're all in this together.