My name is Devesh, I’m 38 and from London but now live in Leicester with my family. I have Thalassaemia Major with the extra collectibles such as Osteoporosis and Heart Failure.
Growing up I always tried to keep my Thalassaemia Major on the back burner and always away from friends. I learnt that as I grew up this wasn’t always possible particularly when I started university in 2003.
I wanted some ‘normality’ in my life and be like everyone else and this meant not being very good when it came to my chelation therapy. I would miss it probably 90% of the time and before I knew it I was walking home from lectures and I collapsed suddenly. I didn’t know it at the time but was going through heart failure due to iron overload.
Turned out that my heart function was about 30% and I was lucky to be alive. I found that by trying to be like everyone else I ended up neglecting the part of my life that I felt was not very important.
I fought hard with the help of the NHS to remove all the excess iron that I stand here a better person. I learnt a big lesson the hardest way possible was that I cannot hide my Thalassaemia but it does not define who I am… I am more!
I restarted my life after the heart failure by going to university and then getting a job with an events company as a social media specialist. I’ve worked very hard to over the past two years to build up two successful businesses. My first is ‘Dippers’ and we provide access to hydrotherapy pools for adults with long term health conditions.
Due to Covid-19 and the lockdown ‘Dippers’ has taken a backseat so with my spare time I decided to launch my next venture which is ‘Ego & Co.’ and now create bespoke t-shirts with funny sayings on them. These t-shirts have been a big part of my time in and out of hospital and many doctors would come especially to see what t-shirt I was wearing each day.
Neelam Thapar has Beta Thalassaemia major. She attends Whittington Hospital for her treatment combining this with working full time.
Neelam works at the London Metropolitan University where she is the Head of Careers and Employability Service, leading a team of staff delivering careers information, advice and guidance, employer engagement and embedding employability within learning and teaching. She is a careers practitioner with substantial experience in service management, strategy and delivering careers guidance to students and professionals. Neelam has a MSc in Education and Training, Diploma in CEIAG and a Diploma in Personal Performance Coaching and is interested in education and social mobility.
She has been a trustee of the UKTS in the past with specific responsibility for co-leading an Asian Awareness Campaign. She has been a peer reviewer to The Cochrane Cystic Fibrosis and Genetic Disorders Group and has also had chapter published in a book; Before Birth; Living with a congenital condition: the views of adults who have cystic fibrosis, sickle cell anaemia, Down’s syndrome, spina bifida or thalassaemia (Routledge;2017).
Priya is a healthcare professional who doesn’t have thalassaemia but pro-actively promotes thalassaemia and UKTS. Priya started at UKTS as an administrator and has past experience volunteering in University College London Hospital in the A&E ward. She currently works as a physician associate in a General Practice (GP) and likes to get involved in events.
My name is Tanya. I have Thalassemia Major and am also a Diabetic type 1. I am 48 years young.
I am lucky to be married to a supportive husband and together we spend our time going for long walks and holiday’s as often as we are able to. We also spend time on our canal boat enjoying the peace and tranquillity.
Living with both illnesses, I have been fortunate enough to have worked for the last 30 years switching between the beauty and photography industry. I have remained active over time, taking part in hobbies such as amateur dramatics, salsa dance and skiing.
I have always made sure to include exercise and a healthy diet within my lifestyle as I realise how important this is for my well-being. I meditate every evening and practise breathing exercises to help with anxiety and the everyday stresses life brings.
I am proud to say that I have raised approximately £8000 for the UKTS over the years through eventing. I hope that others will aim to do the same because not only are the funds much needed, the events help to raise awareness.
My goal as an ambassador is to share positivity and happiness to you all as best I can.
I am not saying life has always been a blast, however I have found my own unique ways of dealing with life’s challenges.
Please see my Instagram page for small hints and tips that may just help some of you…
‘beinghappyandthaly’
Tanya ❣️
Bharat Nathwani is one of the founding members of the society. He was introduced to thalassaemia when his daughter Mena was diagnosed shortly after birth. Bharat served as a board member for many years, also assisting with the bookkeeping and accounts.
He has also been a great support to the younger parents over the years, sharing his experiences of caring for a child from birth to adulthood, especially during the years when little of nothing was known about the condition itself. Bharat is an accountant by profession.
Gabriel is a 41-year-old beta thalassaemia major patient; and has served as President of the Society for the past 8 terms. He works full time in the accounting profession. In 2006 Gabriel became the first person in the world with thalassaemia major to complete a marathon race, a remarkable achievement. In 2013 he repeated this feat when he again completed the London marathon, raising funds for the Society and raising the morale of thalassaemia patients everywhere. Gabriel and his wife became parents with the arrival of their twin boys in April 2016.
Anand has lived with thalassaemia major for the past 30+ years. Though it has been a challenge at times, it has spurred him to succeed in life, particularly through school, university and now in a professional career. Anand has had the experience of being treated at a regional hospital with limited expertise in thalassaemia. He has been fortunate to have a great support network around him in life, and this has encouraged Anand to help others with thalassaemia and to make a difference in the community. As a life member of UKTS, Anand has seen the great work the society has done. Career wise, Anand works in the City of London in brand, marketing and communications (BMC) for one of the Big-4 accountancy firms. In the past, Anand has worked for a number of global accountancy and law firms in BMC. He has also been an active member of the Sikh community in Berkshire.
Oddy is a 61-year-old mother of three beautiful grown children, one of whom is a patient. She is also a successful businesswoman who, as soon as she was contacted, jumped in with both feet to do all she could for the society. With her help this year, the society was able to pull off a grand gala and awards function and the massive refurbishment being celebrated. She is now firmly committed to the cause and brings a breath of fresh air to the board.
Roanna is the holder of Bachelors and Masters of Science degrees (with distinction) in Psychology. She was one of the youngest patients to take on her PhD and doctorate research, being obtained by her sheer hard work and well deserved scholarships. Having been forced to take a break due to medical issues outside her control, she has been volunteering for the society on a full time basis, over the past two years. Roanna has been representing the charity at all the major events over the last two years, responsible for most of our medical and scientific submissions done during that period. She has also been our spokesperson for most of the meetings, screening, peer reviews, infected blood enquiry, NICE, to name a few.
Roanna is also been mainly responsible for success enjoyed with our media, social media and online campaigns creating and forging new links with stakeholders like NHS Blood and Transplant Unit etc.
Yiannis is a 27-year old beta thalassaemia intermediate patient from Cyprus, currently living in the UK and working full time as a financial advisor
Ashkaan Bandoui is a 31-year-old thalassaemia patient, originally from Iran but living in London since he was two months old. He majored in graphic design at university but is currently working as an estate agent. He also enjoys playing the Iranian drum called the DAF which originates from Kurdistan and has been performing with a band for over nine years. Ashkaan joined the board of trustees in 2017 and has been a great addition to the team to date.
Living with a chronic condition is challenging especially with rigid treatment regime one must follow just to remain healthy, regular blood transfusions, daily chelation medication etc. I must admit that I haven’t always been 100% compliant with my treatment and I tend to do things I shouldn’t, but I have always been honest with the Haematology team when asked, which is important.
I have been fortunate as well as the company I work for is very supportive when it comes to having time off for medical reasons or when I am feeling low, pre-transfusion. I am very grateful for my many friends at work especially I try to live each day to its fullest, to enjoy the times and days as much as I can.
I enjoy eating things I shouldn’t, travelling to new places, reading books and try not to take life too seriously. I am trying to keep up with my reading challenge this year. I always set myself a target of 50 books a year.
My name is Zehra Gokturk. I am a 49 year old wife and proud mum to two boys. My career as a Turkish Medical Interpreter has spanned for over 30 years. Having lived with Thalassaemia, I made the decision to join the team as an Ambassador and outreach worker for the UKTS, with the aim of raising awareness about Thalassaemia to other patients and their families.
Nina Wadia is a British actress, known for playing Zainab Masood in the BBC soap opera EastEnders, Mrs Hussein in the Open All Hours and for starring in the hit BBC Goodness Gracious Me. Additionally, Wadia played an important role in the Hindi-language romantic comedy Namaste London.
Nina is also committed in supporting the various campaigns spearheaded by the society towards raising awareness of the condition and the fact that it is a genetically inherited disorder which can be prevented.
Peter has starred in the world’s most successful musicals of all time and his acting career is now in its 40th year. Amongst numerous other roles, he was the Phantom in Sir Andrew Lloyd Weber’s Phantom of the Opera. More recently in 2018, he played Ahmed Qurie in OSLO for which he was nominated for an Olivier award. He has had various TV roles but is most famous for playing Chris Theodopoulopoudos in Birds of a Feather and even today it is shown on TV. Peter is a director of The Royal Theatrical Fund and also teaches in schools, colleges and universities across the UK.
Peter has supported UKTS for over 25 years and now as a patron he is keen to hear about all aspects of the new medical research currently being undertaken. He is particularly excited about the huge advances in gene therapy and feels they offer real hope to patients with thalassaemia.
Kypros Kyprianou is Group Chief Executive for the Theo Paphitis Retail Group, including brands Ryman, Robert Dyas, Boux Avenue and London Graphic Centre, all of which are owned by retail entrepreneur and businessman Theo Paphitis. Kypros has a degree in Actuarial Science from City University and is a qualified banker, having gained this whilst spending the first 13 years of his career at the Bank of Cyprus, UK. In 2004, Kypros left the Bank to join Theo Paphitis’ Group as Commercial Director. A leap into the unknown has been very rewarding for Kypros, with retail acquisitions, disposals, a start-up and growing existing businesses all featuring in his time at the Group. Today the Group has a combined total of around 350 stores, E-commerce sites and 4,200 staff, serving more than 28 million customers a year.
Kypros’ main passion away from work is football, being Chairman and now a trustee of the community’s leading youth football club, Omonia Youth FC for over a decade. Kypros is married to Fanoulla and has three sons. He is a committed supporter of the society and in helping to raise awareness of the society across his network
Tonia Buxton is a Greek Cypriot television presenter and author. She is the host of the Discovery Channel Travel & Living show My Greek Kitchen and is also the author of several publications. Although extremely busy balancing her career and family life, Tonia is determined to support the charity in raising awareness of the inherited disorder.
Adil Ray OBE is best known as the star and creator of the hit BBC1 sitcom Citizen Khan. More on his work can be found via Adil Ray OBE .
Adil is happy to support the society in its future work towards educating the public and improving treatment for patients living with thalassaemia.
Zoe Panaretou joined the UKTS team in July 2020.
She has recently graduated and obtained her degree in Nutrition and Food Consumer Science from the University of Reading. She is now a registered Associate Nutritionist (ANutr) which is accredited by the Association of Nutrition.
Zoe is passionate about health and fitness and will be helping patients to make small adjustments to their lifestyle to improve their quality of life. In her spare time, she volunteers at another charity, specialising in eating disorders.
As part of her role as information officer, she will be helping the team to provide nutrition advice that is specific to the individual’s needs and assisting raising awareness of Thalassaemia.
Romaine’s introduction to thalassaemia came when her only child was diagnosed with the major form of the disorder in 1989. Once she realised that it was an inherited condition which was virtually unknown and was preventable, she threw herself into promoting awareness of the condition and became the lead advocator for adequate patient care in her birth country, Trinidad and Tobago. Despite a hectic schedule of managing a mortgage department for one of the largest banks in the Caribbean, she served as the President of the Society of Severe and Inherited Blood Disorders in Trinidad and Tobago for a number of years.
In 2004, she made a huge career change, moving across to the diplomatic field to join the team at the Trinidad and Tobago High Commission in London. She also joined the UK Thalassaemia Society as a volunteer and served on their board of Trustees from 2010 to 2018. Romaine continued her advocacy role throughout the years leading several delegations to Trinidad and Tobago and arranging and accompanying a TIF delegation to some of the South American countries and Nepal.
In 2017, she was elected as a board member of Thalassaemia International Federation and has recently assumed the role as the Executive Director for the United Kingdom Thalassaemia Society. She was also part of the official delegation visiting Nepal on behalf of both societies.
Neelam is the medical writer and fundraiser at UKTS. She is responsible for producing Thalassaemia News, the Society’s quarterly magazine and also for writing grant applications to secure funding.
Upon completing an MSc at the London School of Economics, Neelam began her career in the City as an Investment Writer. She worked for a number of international banks including UBS, Mizuho Bank, ING Barings and Hermes Investment Management. After a career break to raise her family, she decided to move across to the third sector and took on a press and communications role for a children and young adults’ disability charity. Over the years, Neelam has done a range of freelance writing for a variety of publications. She is married and has three teenage sons.
Teresa Choudhary joined the UKTS team in January 2020.
She obtained her degree in Computer Science from the University of Greenwich and has worked as an IT consultant, nationally and internationally, for a wide range of companies including British Airways, GSK and Lockheed Martin.
She is married with four children and has also been actively involved in fundraising for their schools, holding both secretary and vice chair roles for the PTA. She also manages, in her spare time, to assist with the various activities of the local Brownies and Guides.
Teresa is passionate about education and will be working with schools, colleges, universities and community groups to spread awareness of thalassaemia. Teresa will be dedicating most of her time at the UKTS towards improving the pathways for screening and awareness campaigns in the various committees. In addition to this she will be maintaining the UKTS database and ensuring compliance with GDPR regulations.
Sophia is a Fashion Marketing graduate from the University of Leeds. She has previously worked for a luxury skincare and lifestyle company where she specialised in communications and public relations.
She is quite passionate about film photography, screenwriting, thrifted fashion and all things wellbeing. An avid yogi and advocate for meditation, pursuing a healthy lifestyle is something very important to her. Currently she is undertaking an extracurricular course teaching and practicing the core skills used in a counselling relationship.
The UK Thalassaemia Society is a charity very close to Sophia’s heart and family. Honoured to be a child raised by a parent with Thalassaemia major, she has first-hand experience witnessing how the charities research impacts the lives of patients and their families.