Politicians set to learn from Mish’s rare disease experience
Published on 26 February 2019
Public speaking is a major part of Mishal Dattani’s professional life but the University of Dundee senior student recruitment officer will face an entirely different audience when he appears at the House of Commons tomorrow
Mishal, known as Mish to friends and colleagues, will be discussing his experiences of living with Budd-Chiari syndrome at a Westminster reception to mark Rare Disease Day on Wednesday 27 February.
The event is being hosted by the charity Rare Disease UK. Mish, a media volunteer with RDUK, will tell the politicians and policymakers about Budd-Chiari, a liver condition that only around 1 in every million people suffer from, and how he has spent the past two years putting his life back together following his diagnosis.
Budd-Chiari affects the liver and blood vessels, where blood flowing into the liver has difficulty in being able to flow out, leading to serious complications. Mish, now aged 33, experienced symptoms of escalating severity for several months before finally bowing to pressure from his family and attending hospital in October 2016. By that point, he was struggling to walk and doctors immediately realised something serious was going on.
“I had moved up to Dundee from London about 18 months before I started feeling ill,” said Mish. “Part of my new job involved a lot of overseas travel so when I started feeling fatigued and noticed that I had put on weight I initially put it down to elements of my lifestyle at the time.
“I was starting to find it a struggle to breathe and could hardly sleep due to the back and chest pain I was experiencing. I was down in London for my dad’s 60th birthday but my family could see how ill I was and eventually persuaded me to go to hospital. By this point I was struggling to walk because of the fatigue and because of how swollen my feet were.
“A CT scan showed that I had an enlarged spleen and swollen liver. Budd-Chiari means that your liver doesn’t work the way it should and all this fluid was leaking into other parts of my body. It was filling my lungs, which was why I was having trouble breathing. In all they drained 13 litres of fluid from my body.”
Mish spent a total of 59 days in hospital awaiting diagnosis and treatment over two stays. He was placed on the waiting list for a liver transplant only to be later told that would be unnecessary following the Budd-Chiari diagnosis. Doctors instead inserted a shunt through Mish’s jugular vein to allow fluid/blood to flow properly once again and he was discharged in January 2019.
Mish continues to visit a liver disease consultant and haematologist at the Royal Free Hospital in London and takes anticoagulation medication. He was supported back to work by colleagues in the University’s recruitment team and allowed to switch roles to one that did not necessitate overseas travel.
“In all I was off work for seven months but I am so grateful to my manager Ali Clark as well as Will Harman and Jason Norris and others for helping me get to this stage,” he continued. “I’m the type of person who hates being stuck at home not doing anything so that was a big incentive to get back but it’s quite common for people with my condition to have to give up work or go part-time.
“Travelling around the UK is part of my job and I feel more tired than the rest of the group I’m going with but I’ve found ways to get around this. Getting out of bed can be a real struggle so my employers have allowed me some flexibility to arrive in the office a bit later if need be when I’m in Dundee.
“The daily management of the disease is something I’ve had to get used to. I take 8 or 9 tablets every day and have to have regular blood tests, ideally once a week, to check that the medication isn’t causing me problems elsewhere. My meds are adjusted according to the results and I have to be really careful with what I eat and drink to avoid reactions.
“There are other specialist liver centres closer to Dundee but I find that it works to see the consultant at the Royal Free. That’s where I spent time as an inpatient and my family are down there. I’m in London so often for work that I can arrange meetings and school visits to speak to potential applicants around my hospital appointments.
“Since my diagnosis and learning about the condition I’ve started to volunteer with both RDUK and the British Liver Trust. I’m used to standing in front of large numbers of people as part of my job so I’m happy to be doing this event at Westminster and to raise awareness of Budd-Chiari and other rare diseases.
“It’s such a rare disease that there’s a worldwide Facebook group and we only have about 140 members! I recently met another sufferer in person for the first time, a lady from near Glasgow. She’s in her 60s and had it since childhood and had family so that was very reassuring that you could still have a great life with this condition.”
Press Office, University of Dundeepress@dundee.ac.uk