Posted on Tuesday 10 November 2020
Anisah Osman Britton with mother Naazneen Osman Britton
Anisah Osman Britton with her mother Naazneen before her operation.
A woman named in Forbes magazine’s 30 under 30 list says her life has been transformed after undergoing robotic surgery at Guy’s and St Thomas’.
Anisah Osman Britton, who founded the London-based coding school 23 Code Street, was diagnosed with a rare condition known as myasthenia gravis, which causes muscle weakness. Within weeks the disease had affected her vision, caused breathlessness and extreme tiredness.
Myasthenia gravis occurs when the immune system damages the junction between nerves and muscles, preventing messages from the nerve endings reaching the muscles, in turn making muscles weak and tired. It is not clear why this starts but it is thought that the thymus gland in the chest, which contributes to the immune system, plays a part. Some people with the condition have an abnormally large thymus gland.
Anisah, 27, found her diagnosis particularly hard to accept because her mother Naazneen also has it. As a result Naazneen needed a massive operation to remove her thymus gland, and has suffered from other illnesses since.
Anisah, who splits her time between west London and Mainz in Germany, said: “I realised something was wrong when I noticed that my right eye had started to droop and close by itself. Then I started to get double vision and breathlessness. Finding out I had myasthenia gravis caused a lot of anxiety because I knew what my mum had been through. She felt very guilty and struggled with my diagnosis, especially because it’s not thought to be genetic.
“I became lethargic, I put on weight due to having to lead a sedentary lifestyle and felt weak. I had been used to running up four flight of stairs to get to my office but now I couldn’t even walk up one.
“It was traumatic. I thought I was invincible – I was young and running my own company. It took the wind out of my sails and as a result I became very depressed and suffered from panic attacks.”
Anisah was referred to Guy’s and St Thomas’ where she was treated with medication which helps signals travel between muscles and nerves, improving her symptoms. Tests also found that her thymus was enlarged and had a benign tumour on it, so it needed to be removed. She was told this could hopefully be done using robotic surgery which would involve much smaller incisions and a faster recovery time.
She said: “I was very scared about the operation, partially because of my mum’s experience. She had open chest surgery to remove her thymus gland which left a scar from her neck to her stomach. I don't think I would have agreed to open chest surgery. My mum and I look similar enough, we didn't also need matching scars! I felt more assured by the robotic process.
“I was so relieved when I woke up and was told the surgery had been done robotically. It was an incredible experience. The team were so kind and understanding.”
Mr Routledge, consultant thoracic surgeon at Guy’s and St Thomas’, said: “Often removing the thymus gland can reduce the harmful immune response that causes muscle weakness in patients with myasthenia gravis. Conventional surgery involves cutting through the breastbone and opening the ribcage to remove the gland. We are now able to perform this operation robotically with just three small incisions. This benefits patients greatly as it involves a faster recovery and shorter hospital stay.”
The team at Guy’s and St Thomas’ has performed this robotic operation for about three years, treating around 20 patients each year.
Dr Sui Wong, consultant neurologist and neuro-ophthalmologist at Guy's and St Thomas' and Moorfields Eye Hospital, is one of the country's leading specialists in myasthenia gravis and its effects on vision. She said: “Myasthenia gravis can be limited to vision problems such as drooping eyelids and double vision or, in cases like Anisah’s, it can cause more generalised weakness of the body. Anisah is doing really well following her treatment. Her case is a bit unusual because myasthenia gravis isn't usually genetic.
"It's wonderful that Anisah has benefitted so much from having her thymus gland removed. We are all born with a thymus gland but in most people it starts to shrink away as you get older. Patients with myasthenia gravis can have an inappropriate enlargement of the gland and can develop tumours in it. If tumours are present the thymus needs to be removed as there is a risk they can continue to grow and cause harm. For some patients it is also appropriate to consider removing it to treat their condition."
Within a few months of surgery Anisah’s vision and energy levels were even better and she started therapy to help her to cope with what had happened. She recently took part in the virtual London Marathon to raise money for Guy’s and St Thomas’. She said: “I just want to give back in some way. I can’t explain how amazing my care has been.”
Anisah says the overall experience has changed her. She said: “Stress can make the condition worse so I've become more chilled out. It's been transformational. It's made me realise I need to focus on looking after myself and doing things I love outside work, if I also want to continue to work. My parents are so proud of how far I've come.”
To help Anisah reach her fundraising target visit Virgin Money Giving.