Our communications volunteer, Madison James interviewed Zainab Alani, a 21-year-old medical student at the University of Glasgow and the founder of Rarely Social (a new social collective designed to help young people living with rare conditions to meet and connect), to discuss her plans for the group and her own experiences with being diagnosed with Myasthenia Gravis as a teenager for this week’s blog!
Zainab Alani was just 16 years old, alone in her bedroom and finishing her French homework, when her life changed. An NHS consultant called her up to tell her that the results of her blood test were in. She had Myasthenia Gravis, a rare neuromuscular disease that causes chronic weakness in the voluntary muscles, and could pick up her medication on Monday. And that was that.
“To this day, it still shocks me that that was what she thought was appropriate for delivering a diagnosis when I was still at that age, probably classed as a child.”
After learning about her disease, she felt that none of her peers could understand what she was going through. She attended events run by the charity Myaware with her mother, only for people to express shock that Zainab was the one with the diagnosis.
Her experiences inspired her to launch Rarely Social, a social enterprise that seeks to connect young people aged 16-30 living with a rare disease all over the world.
“I met one of my good friends, who I’m still in contact with to this day, who also has Myasthenia, and we just felt so isolated. And then speaking to other young people with rare diseases, I realised that this was a common theme, and a lot of young people didn’t have a network of young people.
Rare diseases are in their essence quite isolating, because a few people have them, but collectively, there are a lot of us… and when you bring young people together, we just feel a sense of community.
I spoke to people, and they said, ‘Yeah, I’d love this, but there’s nothing like it in my area’. So I thought maybe if we want it, we should be the change we want to see, and I thought I’d try and set it up.”
Promoting worldwide connections
Zainab is currently in the early stages of launching the group, and aims to hold their first meetings sometime over the next two months as the patient network grows.
So far, people from all over the world, including Bahrain, Australia, New Zealand, the UK and Austria, have registered on the platform.
There is also an option to take on a position of responsibility in Rarely Social by becoming an ambassador, which involves networking with advocates and patients in the local area.
She says that at this early stage, she aims to foster simple avenues of connection.
“It will be simple things to start with, so things like Zooms, which are easy to host.
When I asked what people wanted, you’d think that everybody would be wanting big things, but some really simple things were just like a forum to chat.
But as we grow and create more of a network, and there’s more people within each respective country, hopefully we’ll have in-person events, and each country can run their own thing. [But we’ll start with] just small baby steps.”
The loneliest generation
Young people in the UK have been collectively dubbed ‘the loneliest generation’. Data shows that those aged between 16-29 are more than twice as likely to say that they feel lonely often or always compared to those over 70.
In addition to this, living with a chronic health condition, especially a rare disease, is among the highest risk factors for loneliness.
“I feel especially when you are a young person, it can already be a time where you know friendship groups are changing, people are forming groups. And if you’ve got a rare condition on top of that, it just makes everything that bit harder.
I know myself and many other people with Myasthenia, because it’s a muscular condition, we get so fatigued that it’s hard to keep up with commitments or go out when we say we will.
And people might think we’re just one of those people that always cancel, but it’s our health condition, so having a network of young people with rare conditions who actually understand makes a big difference.”
The effects of the pandemic
Zainab believes that the Covid-19 pandemic worsened the issue of loneliness among young people, especially among those with rare diseases who may be immunocompromised.
During the pandemic, Zainab was given high doses of steroids and immunosuppressants, as well as an infusion which wiped out one of her immune cells, resulting in her being placed on the shielding list.
Through patient forum groups, she learnt that Myasthenia patients had passed away due to going into crisis after catching Covid, and as a medical student herself, knew that it was likely she would have to go on a ventilator if she was taken to hospital.
“I couldn’t leave my house. I had to stay in. A lot of people just assumed it was the elderly who were on the shielding list, so people were really confused about why I couldn’t even come to the door. But it really was a matter of life or death for me.
It was quite a mentally taxing time. On top of not being able to see any of my friends, even after schools went back, I was wearing a mask before it was made compulsory.
At that time, I hadn’t told people I had Myasthenia, and a lot of people were quite judgmental and didn’t really want to be around me.
I was lucky that I had a small circle of friends who, even when I didn’t want to say what was wrong with me, were supporting me.
Even after my surgery, I couldn’t hold my own backpack because I had a big surgery under my chest. One of my friends didn’t question me, but she knew I needed her at that point, and she was happy to help me throughout classes, going between places.
I’m so fortunate that I had these friends, but more importantly, my family were there through it all.”
The importance of a social network
During periods when she could not leave the house because of her condition, her family would organise movie nights or fun activities.
“That meant I didn’t feel like I was missing out on the world around me, and for that, I’m eternally grateful.”
Zainab feels that those who do not have a strong family or friend network, such as people living alone or in university accommodation, are at risk of isolation, especially as it can be difficult for young people to build social connections.
“If you don’t [already have] work friends or gym friends, people who are already isolated can find it harder to go into these spaces, because it’s hard to just make that first step and go out and make friends.”
She recalls speaking to another young person with a rare condition who told her a story that she found “really heartbreaking”.
“After they had to cancel [plans] because of their condition, they just wouldn’t get invited out anymore because others thought there was no point inviting them.
And I think it’s really sad to see that young people who have so much energy and want to go out and make a change in the world, are just getting denied social opportunities because of their rare conditions.”
Diagnostic odyssey
Moreover, social networks for young people with rare diseases are important as they are most likely to be affected by the diagnostic odyssey.
Children and adolescents generally experience a longer diagnosis journey than adults, with young people aged between 10-20 years waiting an average of 10.4 years for their condition to be identified.
Zainab herself had a difficult experience when getting diagnosed. Though her mother is a GP herself and recognised that she may have Myasthenia, her symptoms were repeatedly dismissed by doctors.
“It was a lot of being sent back, rejected, being belittled, and being sent away.”
“Despite having someone fighting my corner, I remember when I went to my GP, they said ‘Oh, you’re just being a worried doctor. There’s nothing wrong with her. She’s fine.’
I remember going to A&E, and I got told that I was trying to take time off the first day of Fifth Year, but I’m a really hard working student, and that was not who I was.
I remember being told that I had an allergic reaction to eye drops, which I’d never been on before, so I don’t know where that came from.
I got told that it was just my time of the month. I got told that I was lazy, that I was a teenager, that it was just normal for teenagers to be tired. But I don’t know if that doctor was used to seeing teenagers whose eyes couldn’t open at 10am in the morning, because that’s what I was like at that point.
It was a lot of being sent back, rejected, being belittled, and being sent away, until my mum just kept saying to everyone, I think it could be Myasthenia.
And then luckily, one of the registrars, so not a consultant, but a more junior doctor, actually agreed with my mum and said, ‘I think it would be worthwhile doing the blood test.’
But keep in mind, this was after I’d had brain CT scans, and they’d taken my family to the family room thinking it was a brain tumor. I had a needle in my spine because they thought it was meningitis, and they did all these invasive tests before they did the blood test, which is quite shocking, really.”
“Regardless of the field I go into, I will remain an advocate like I am now.”
Zainab is now 21 and is a medical student at the University of Glasgow. She hopes to go into trauma and emergency medicine, especially as she could help identify patients presenting with rare disease symptoms; her own journey started with numerous trips to A&E.
“Regardless of the field I go into, I will remain an advocate like I am now. Wherever I go, I stick up the Medics for Rare Disease (M4RD) and Beacon posters whenever I see an empty space. I’ll keep doing what I’m doing.”
Find out more about Rarely Social and sign up here!
