A TB survivor and care advocate - Fatima's story

Blog 22 Mar 2023

Fatima Karmadwala, International Public Health

1. Tell me about your experience of having multi-drug resistant TB? How did it affect your life and how did that make you feel?

I moved from my hometown of Blackburn, for university, and to kickstart my future. At the end of first year I got very sick. I had a nasty cough that wouldn’t go, and I lost a lot of weight. I went to the GP, but nobody thought to check if I had TB. I also visited A& E, but they sent me home. Eventually, I was diagnosed with multi-drug resistant TB (MDR-TB) and quickly admitted to a hospital near my home into a negative pressure room (a room that filters the air frequently). At that time, nobody explained to me what MDR TB was, so I googled it.

I missed a lot of my studies because of my diagnosis. People thought I was contagious, despite me not being due to my treatment, and they were reluctant to meet me face-to-face. I was a TB patient and a university student with friends, but I went home to a box of medication.

2) You had a long road to recovery and the treatment for MDR TB is very intense. What did it entail?

After 50 days in hospital, I was transferred to Liverpool University Hospital NHS Foundation Trust. Overall, my treatment included 50 days of isolation in a negative pressure room, 20 months of daily oral medications, and eight months of IV (intravenous) treatment through a PICC line (drip) three times a week. The PICC line limited what I could do and swallowing the pills every day was hard. The side effects were constant: red skin, nails, and urine, whilst peripheral neuropathy meant I could barely walk. My most intense side effect was severe abdominal pain that lasted for one and a half years after my treatment ended.

3) Having treatment affected you financially - what changes could the government or other organisations make to improve support for people with TB?

I had no income as I’d lost my job because people thought I was still contagious, and I was still paying rent for accommodation I wasn’t living in - there are no special concessions for a TB patient. My mum paid a daily parking fee, whilst visiting me at the hospital. We weren’t made aware that you can get help with this. I applied for Personal Independence Payment (PIP) to help with costs. The Department of Work and Pensions interviewed me and looked through my doctor’s notes. You are marked between 0 and10; 0 being nothing and 10 being at the severe end of the scale. I was scored a 0 on every single question. My condition was a 0 to them. I refused to accept it and appealed. I was eventually paid the lowest amount available. I still don’t work, and I still have no help.

TB patients need to be better recognised. Just because there isn’t always a scar or a bruise, doesn’t mean the illness isn’t happening inside of us. There should be a set payment plan as soon as you are diagnosed with TB. People don’t seek diagnosis or treatment, for fear of missing out on their wage. If they were guaranteed help after being diagnosis, TB could be detected and treated earlier, in more people.

4) You have said you felt better supported once your treatment moved to Liverpool. Which organisations, teams, and people worked with you to improve your treatment and situation?

My doctor, Dr Gerry Davies, changed everything for me. He spoke to me and treated me like a human being; he was present whenever I needed medical help. He wasn’t afraid of my condition, which made me feel comfortable about contacting him with any issues. I didn’t feel like a burden, I felt like I was his only patient. He made sure my treatment plans were prioritised and my side effects recognised. Every patient wants that recognition.

My TB nurses visited me regularly and it was like seeing friends who knew how having TB felt. I remember Amina Farrah, one of the TB nurses, fondly. Ian at The Royal Liverpool Hospital did my IV treatment three times a week and was extremely friendly, which helped me feel “normal”.

LSTM’s Dr Bertie Squire and Tom Wingfield also saw me as far more than a patient. They opened opportunities for me, through the treatment of my TB, which I never thought was possible. It helped my confidence a lot and I made lifelong connections.

5) You successfully completed a master’s in international public health at LSTM, with a thesis focusing on the economic impact of TB on those affected. You're also an advocate for people with TB, including with the World Health Organization. What inspires you?

After being diagnosed, I changed my education programme from sport psychology to a master’s in international public health at LSTM. It is something I am so passionate about and I want to make a difference.

I hope to reduce the stigma for people with TB. I faced a lot of shaming and stigma from people, because of my TB. I want people to be able to say they have TB, without worrying about the consequences. TB can be an invisible illness. I was told not to take the lift at hospital and to use the the stairs, because I was young, to free up the lift for people who needed it more. I didn’t want to tell people in the lift that I had TB and was breathlessness, so I forced myself up the stairs.

I’d also like people to gain financial support once they’re diagnosed with TB. I’m studying at LSTM now and my thesis is on the catastrophic costs to TB patients in the UK. I’m working with WHO and UKAPTB, and hope to be able to help shape global policies around the financial impact of TB.

Outside of my study, I’m focusing on my one-year-old daughter and expecting my second baby. I want people to know that you can have healthy relationships and grow your family, regardless of what you have been through. I never thought I could have a family due to the severe side effects I faced. I hope to be proof to patients undergoing treatment, that it gets better.