Research participant profile: Maryam Masood was diagnosed with ulcerative colitis at the age of 20. But that had followed three years of symptoms and uncertainty about what was causing them.
She is now taking part in research trials supported by the NIHR Oxford Biomedical Research Centre (BRC), and says she wants to help people who find themselves in a similar situation to the one she experienced.
“When I was approached about participating in a research study, I initially said no. And then I thought: if there’s someone out there of my age who needs the help that I didn’t get and I can give it to them, then that’s better than them being left alone in the dark,” Maryam says.
“There was a period before I was diagnosed when I didn’t know what was happening. If I can help someone understand what they have, it’s rewarding for me, because I didn’t have that, and it’s easier for them to deal with the condition.”
Maryam, now 26, moved to the UK from Pakistan as a baby. She lives in Banbury and works as a production craftsman.
After she was diagnosed, her doctors tried a series of drugs to treat her, but they either had unwelcome side-effects or their effect was short-lived.
“Pretty much the whole of my 20s was me in and out of hospital,” Maryam explains. “I was referred to the Horton [General Hospital] and, when it got really serious in the middle of lockdown, I was transferred to the John Radcliffe and spent about a week there. Since then, it’s been trial and error with different medications.”
“If I can help someone understand what they have, it’s rewarding for me … and it’s easier for them to deal with the condition.” Maryam Masood
She now appears to be responding well to the treatment she is currently receiving – upadacitinib, a medication that inhibits the activity of one or more of the JAK family of enzymes.
Maryam is now contributing to the SAGITTARIUS study, which is exploring the molecular mechanisms of response or non-response to advanced therapies for ulcerative colitis, with the aim of tailoring treatments to the individual drivers of inflammation.
She has also used TrueColours, a platform trialled by Oxford BRC-supported researchers. TrueColours is an online symptom tracking system managed by the patient themselves that allows clinicians to remotely monitor how symptoms are evolving over time, and take appropriate action in real time. An additional benefit of the system is that it has reduced the need for unnecessary hospital visits.
Maryam explains: “True Colours is just a questionnaire that you fill out every couple of weeks. At first, I didn’t really get why I had to do it, but I carried on. Earlier this year, I had a meeting with one of the doctors and they showed me the tracked history of how bad I was and how every couple of weeks my health was changing, depending on the different drugs. It was interesting to see what was working and what wasn’t. Now I understand the value and see the importance of keeping up to date with it whenever I have to fill it out.”
Maryam says it’s important that she speaks out about her condition to help others: “In my community, I don’t know anyone else who has it, so it’s a struggle to try to explain to them what it is. I’d like people that look like me and are from the same place as me to say: ‘Oh, she has it, it’s perfectly normal to have it’.
“In the beginning I was made to feel like an alien for constantly running to the toilet. There must be a lot of people in my community who have it and are quiet about it. My family is definitely more understanding about my condition now. In the beginning, none of us had a clue until I got very sick. Now they totally get it. I also kept it hidden from my friends for such a long time. That’s something you shouldn’t do – it affects your mental health as well. Tell everyone who needs to know.”
She recognises that to bring about positive change, it requires people to step up and make it happen.
“It’s not that people are resistant to research, they just don’t know enough about what it is for, and why it is needed. They’ll think ‘someone else can do it’. But you need to be that person for someone else to do it. So I thought ‘why not’.
“If you have the opportunity to get involved in research, take it, as long as you’re comfortable. There’s no cure. Maybe one day in the future there will be a cure. And we won’t have to be hiding inside most of the time.”