See you in Dubai - United Kingdom Thalassaemia Society

contents 

Most of our readers will be aware of 

the forthcoming big event in the world 

of thalassaemia – the Thalassaemia 

International Federation 10th International 

Conference on Thalassaemia and 

Haemoglobinopathies & 12th International 

Conference for Thalassaemia Patients and 

Parents. This bi-annual event will be held 

from 7th-10th January 2006 in the Dubai 

World Trade Centre, United Arab Emirates. 

A word from our President . . . . . . . . . . 2 

Latest News . . . . . . . . . . . . . . . . . . . . . . . . 3 

Medical News . . . . . . . . . . . . . . . . . . . . . 4 

Profile . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8 

December 2005 ISSUE NUMBER 103 

See you in Dubai 

This will be the first time that the TIF 

conference for patients and parents has 

been held in the Middle East. Thalassaemia 

is a major health problem in this part 

of the world and this conference will 

undoubtedly raise awareness and draw 

attention to prevention and effective 

treatment for thalassaemia. Says TIF 

Chairman Mr Panos Englezos, “The 

conferences provide participants with a 

stimulating atmosphere, helping to raise 

hope, awareness and commitment to the 

challenges of fighting thalassaemia and 

other severe haemoglobinopathies. Patients 

and parents will have a unique opportunity 

to learn about the latest developments in 

the field, with a chance to participate in 

open discussions with experts and among 

themselves.” 

Thalassaemia patients and parents 

News from around the world . . . . . . . . 9 

Patient News . . . . . . . . . . . . . . . . . . . . . . 14 

Events . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 

Office News . . . . . . . . . . . . . . . . . . . . . . . 17 

from all parts of the world attend the TIF 

conferences and those from the UK who 

have attended in the past have found it 

to be a truly inspiring experience and a 

great opportunity to create long-lasting 

friendships. 

One of the core principles of UKTS is 

commitment to helping thalassaemia 

patients learn everything possible about 

managing their condition. We are also very 

aware of the importance of information 

sharing, support and friendship with other 

patients both at home and abroad. We 

have therefore offered a financial subsidy 

of £300 to all thalassaemia patients who 

are current, paid-up members of the 

Society who attend the Dubai conference. 

(All persons who are eligible for the subsidy 

will have received a personal letter dated 

31.10.05. Only those who are members in 

their own name will qualify.) If you have 

received the subsidy letter and intend to 

travel to Dubai for the conference, please 

inform the UKTS office immediately if you 

have not already done so. We look forward 

to hearing from you and to seeing you in 

Dubai. 

UNITED KINGDOM 

THALASSAEMIA SOCIETY 

A Charity Organisation 

Registration Number: 275107 

19 The Broadway 

Southgate Circus, London N14 6PH 

Telephone: 0208 882 0011 • Fax: 0208 882 8618 

Email: office@ukts .org • www .ukts .org

A word from our President 

Dear Friends, 

First of all, I should explain to you 

all why you are getting your copy of 

Thalassaemia Matters in the unusual 

month of December! Basically, we 

decided to keep back the October 

issue so that we could report to you 

on our annual dinner dance – more 

and more things kept coming up 

which we felt we couldn’t leave out 

- and as you can see this is a bumper 

issue. So I hope you will forgive us 

for not getting the next one out in 

January 2006. (Might I add that we 

have taken the liberty of including 

the subscription reminder notices 

– annual members take note.) 

As we are approaching the end of the 

year I would like to say a few words 

about the work of the Society during 

2005. By far the most significant date 

was the 14th June, when we launched 

our new publication Standards for 

the Clinical Care of Children and 

Adults with Thalassaemia in the UK 

(at our 2nd national conference for 

doctors who treat thalassaemia). I 

am proud and happy to say that the 

book has been distributed to doctors, 

nurses, patients and healthcare 

commissioners throughout the UK 

and even beyond; and our office 

www.ukts.org 

continues to receive almost daily 

requests for copies. Remember that 

patients and parents can obtain a 

free copy on request from our office. 

Our cover story is the Thalassaemia 

International Federation conference 

in Dubai in January 2006. We are all 

looking forward to meeting patients 

and families from the UK and around 

the world, some of them our own 

UKTS members. If you will be 

attending the conference, don’t forget 

to introduce yourself – I promise you 

won’t miss the UKTS crew, aka “The 

Wild Bunch”! Seriously, though, we 

would love to meet any of our friends 

from the thalassaemia community 

everywhere. 

We have, as ever, a great deal of 

work to look forward to in 2006. 

Let me take this opportunity to say 

how much we value the support of 

our members. Remember that we 

are always here for you if you need 

information, support, or just want 

to tell us about yourself. And don’t 

forget to give us your good news – 

exam results, sporting achievements, 

engagements/weddings or births! 

Remember that a positive example 

from you will inspire other thals both 

in the UK and beyond. 

Finally, with the approach of various 

festivals and the New Year I would 

like to wish all our readers health 

and happiness on behalf of myself, 

the Committee and staff of UKTS. 

Until next year 

Mike Michael 

President, UK Thalassaemia Society 

Aims & 

Objectives 

of UKTS 

■ The relief of persons 

suffering from thalassaemia. 

■ The promotion and coordination 

of research 

in connection with 

thalassaemia. 

■ To educate people on the 

problems of thalassaemia. 

■ To offer counselling to 

sufferers and carriers. 

■ To bring together patients, 

their families and wellwishers 

to exchange ideas 

and information. 

■ To raise by any legal means 

the funds required for the 

above activities. 

the UKts 

Management 

committee 

Mike Michael President 

Menuccia Tassone Vice-President 

Costas Kountourou Secretary 

Olga Demetriou A Secretary 

George Constantinou Treasurer 

Philip Agathangelou A Treasurer 

Maria Gavriel Committee 

Chris Sotirelis Committee 

Andreas Yiannikou Committee

Hindu 

Festival 

Once again, UKTS was present to offer 

free blood screening at the Hindu festival 

Janmasthami Day, which took place this 

year on 26th August. As in previous years, 

the event was held at Bhaktivedanta 

Manor in Watford. We were busy all 

afternoon, sometimes screening whole 

families. Here we see one of the younger 

participants earning her certificate of 

bravery with support from Dad. UKTS 

thanks phlebotomist Nina Demetrova 

and the Haematology Lab of the North 

Middlesex Hospital who processed the 

blood samples for us. 

A New 

Support 

Group in 

Blackburn 

Good news for anyone in the thalassaemia 

community who lives in the Blackburn 

and Darwen area! We are pleased to 

report that a new support group (Friends 

of Thalassaemia) for patients, carers and 

supporters has started up. The new group 

got off to a resounding start with a highly 

successful awareness day, which was held 

in Bangor Street Community Centre on 

24th November 2005. The event, which 

was attended by more than 200 people, 

was opened and attended by the Mayor 

and Mayoress of Blackburn with Darwen. 

UKTS Co-ordinator Elaine Miller attended 

and was delighted to confirm our support 

of this new group. Anyone interested 

in joining the group for friendship, 

information and support, please contact 

Mrs Amina Patel on 07779 726 686 or Mrs 

Salma Jassat on 07779 134 342. 

latest news 

NEBATA 

Dr Kate Ryan, Chair of NEBATA and Vice-Chair 

Mrs Zanib Rasul 

The North of England Bone Marrow 

and Thalassaemia Association held their 

8th annual Awareness Conference on 

Sunday 2nd October 2005 at the Carlisle 

Business Centre in Bradford. Co-ordinator 

Elaine Miller attended on behalf of UKTS 

and gave a presentation on our new 

publication Standards for the Clinical Care 

of Children and Adults with Thalassaemia 

in the UK. The day was chaired by Dr Kate 

Ryan from Manchester Royal Infirmary. The 

subjects of the other presentations were; 

Bone Marrow Transplantation and its Role 

8th Annual 

Awareness 

Conference 

in Modern Thalassaemia Treatment (Dr 

Sally Kinsey, St James’s Hospital, Leeds), 

Blood Transfusion and Iron Chelation 

(Dr Farrukh Shah, Whittington Hospital, 

London), The Importance of Other 

Haemoglobin Genes with Thalassaemia 

(Dr Andrew Will, Royal Manchester 

Children’s Hospital) and NEBATA (Mrs 

Zanib Rasul, NEBATA Co-ordinator). During 

the afternoon workshops were held on; 

moving from paediatric to adult care, iron 

chelation and education and careers. 

Thalassaemia Matters ...continuing the fight against Thalassaemia

N.B. This is an extract from the 

presentation given by Dr Voskaridou 

at our conference on 14.6.05. A 

complete version, including a full list 

of references is available on request 

from the UKTS office. 

Prevention and general principles: 

Prevention and treatment of early bone 

loss consists the best policy. Annual 

checking of BMD starting in adolescence is 

considered indispensable. Physical activity 

must always be encouraged. Moderate and 

high impact activities are to be supported. 

Exercise has additional benefits: it improves 

cardiovascular system, reduces the risk 

of diabetes and prevents depression. 

Smoking should be discouraged. Adequate 

calcium and zinc intake during skeleton 

development can increase bone mass 

in adult life and in combination with 

administration of low doses of vitamin D, 

may prevent bone loss and fractures (Lasko 

et al, 2001). Early diagnosis and treatment 

of diabetes mellitus is also important, as 

the association between diabetes and 

low bone mass in TM patients has been 

well documented (Jensen et al, 1998). 

Adequate iron chelation may prevent iron 

toxicity in the bone and sufficient blood 

transfusions may inhibit uncontrolled bone 

marrow expansion. 

Hormonal replacement: Prevention 

of hypogonadism seems to be the most 

effective way for preventing osteoporosis 

and other bone deformities in TM patients 

(Jensen et al, 1998). Continuous hormonal 

replacement therapy with transdermal 

oestrogen for females or human chorionic 

gonadotrophin for males improves bone 

density parameters (Anapliotou et al; 

1995). 

www.ukts.org 

medical news 

Management of Thalassaemia- 

Induced Osteoporosis 

Ersi Voskaridou, MD, PhD; Evangelos Terpos, MD, PhD 

Thalassaemia Centre, Laikon General Hospital, Athens, Greece 

Calcitonin: It’s a potent inhibitor of 

osteoclasts. It has evaluated the effect on 

bone mass in 14 patients with TM (100 IU 

x 3/w x 1 year) in combination with 250 

mg calcium daily. At the end of treatment 

period, bone pain had disappeared, 

radiological findings of osteoporosis 

had been improved and the number 

of fractures had been decreased in the 

treatment group but not in controls. CT 

had no important side effects (Canatan et 

al, 1995). 

Hydroxyurea: Ten patients with TM were 

given hydroxyurea (1.5 g per os daily), in 

an attempt to reduce marrow hyperplasia 

diagnosed by MRI. Hydroxyurea improved 

bone pain and MRI findings (Angastiniotis 

et al, 1998). However, these results have 

not been confirmed by other studies. 

Bisphosphonates: The increased bone 

resorption observed in patients with 

thalassaemia-induced osteoporosis has 

led to the use of bisphosphonates in the 

management of osteoporosis in this cohort 

of patients. Bisphosphonates are potent 

inhibitors of osteoclastic bone resorption. 

They act by inhibiting osteoclastic 

recruitment and maturation, preventing the 

development of monocyte precursors into 

osteoclasts, inducing osteoclast apoptosis 

and interrupting their attachment to the 

bone (Suda et al, 1997). In thalassaemia 

osteoporosis, almost all generations of 

bisphosphonates have been used in an 

attempt to increase the BMD and improve 

the abnormal bone remodelling. Morabito 

et al (2002) investigated the effects 

of two years daily oral administration 

of alendronate or intramascular 

administration of clodronate on BMD, 

bone turnover markers, safety and 

tolerability in 25 thalassaemia patients with 

osteoporosis. After two years of followup, 

the lumbar spine and femoral neck 

BMD had decreased significantly in the 

placebo group. Clodronate reduced bone 

resorption markers, deoxypyrydinoline and 

pyrydinoline, and inhibited bone loss but it 

was unable to increase BMD at all studied 

sites. Daily treatment with alendronate 

normalised the rate of bone turnover, and 

resulted in a rise in BMD of the spine and 

the hip. The ineffectiveness of clodronate 

was also confirmed by Pennisi et al (2003). 

Pamidronate, a second generation 

aminobisphosphonate, was firstly given 

by Wonke (2001) at doses ranged 

between 15 mg and 60 mg, in a 40 

minutes infusion, at monthly intervals. 

A significant improvement in BMD was 

observed in most patients. Our group 

compared the effects of two different 

doses of pamidronate, 30 mg vs. 60 

mg, on BMD of the lumbar spine, the 

femoral neck and the forearm and 

on markers of bone remodelling and 

osteoclast function in 26 patients with 

thalassaemia and osteoporosis. Thirteen 

patients with thalassaemia major and 5 

patients with thalassaemia intermedia 

were given pamidronate at a dose of 

30mg in a two hour iv infusion, once 

a month for 12 months; another 8 

patients (4 with thalassaemia major 

and 4 with thalassaemia intermedia) 

received a dose of 60 mg/month, in an 

attempt to explore whether increasing 

the dose of pamidronate might have any 

additional effect. The intravenous was 

preferred against to oral administration to 

override the problem of gastrointestinal 

malabsorption of oral bisphosphonates, 

which is less than 10%, and it is 

further reduced by food containing 

milk or iron. Both groups included

Continues from page 4 

patients with comparable degrees of 

osteoporosis and hypogonadism. All 

patients were also receiving calcium, 

and vitamin D supplement prior and 

during the 12-month follow-up period 

of the study. Administration of 30 mg 

of pamidronate resulted in a significant 

increase of the BMD of the lumbar spine 

in all patients, but not the BMD of the 

femoral neck and the forearm. The 60 

mg of pamidronate group showed a 

similarly significant increase in the BMD 

of the lumbar spine in both transfusion 

dependent and transfusion independent 

patients. Administration of both doses 

of pamidronate was also followed by 

a clear decrease of markers of bone 

resorption (NTX, and TRACP-5b), OPG, and 

osteocalcin that was similar in patients of 

both treatment groups. Furthermore, most 

patients complaining for severe bone pain 

at the onset of the study had a significant 

reduction of pain after treatment period. 

No severe adverse-events were reported in 

this study (Voskaridou et al, 2003). 

In another recent study, 29 patients with 

transfusion-dependent beta-thalassaemia 

and severe osteoporosis were given 

zoledronic acid, the most potent third 

generation bisphosphonate to-date, at a 

dose of 1 mg intravenously every 3 months 

over 12 months period. All patients were 

also receiving calcium and vitamin D 

Can you 

help with 

research into 

the quality 

of life of 

thalassaemia 

patients? 

medical news 

supplement prior to and during the study. 

Administration of zoledronic acid was 

followed by a clear increase in the BMD of 

the lumbar spine, as well as by a significant 

decrease in IGF-1 and a significant increase 

in OPG serum levels. No treatment-related 

side-effects were observed in this study 

(Perifanis et al, 2004). 

These studies confirm the effectiveness 

of bisphosphonates in the treatment 

of thalassaemia-induced osteoporosis. 

Alendronate, pamidronate and zoledronic 

acid seem to have the greater efficacy. 

However, more trials must be conducted 

in order to clarify the exact role of each 

biphosphonate, the long-term benefit 

and side-effects as well as the effects of 

the combination of bisphosphonates with 

other effective agents, such as hormonal 

replacement, in thalassaemia-induced 

osteoporosis. 

Conclusion 

Thalassaemia-induced osteoporosis is 

multifactorial and therefore, very difficult 

in its management. Adequate hormonal 

replacement, effective iron chelation, 

improvement of haemoglobin levels, 

calcium and vitamin D administration, 

physical activity, and no smoking, consist 

the main to-date measures for the 

management of the disease. However, 

novel pathogenetic data suggest that 

The term Health Quality of Life (HRQoL) 

plays an important role in healthcare. 

The President of the UKTS President has 

stated that the “quality of life, for 

those suffering from thalassaemia 

encompasses three things: patient 

attitude, transfusion regime and 

chelation”. Patients should have a 

voice and their experiences of their illness 

should be recognized. Medical research 

dominates the field of thalassamia for 

that reason the aim of Psychologists is 

to explore the psychological and social 

aspects of HRQoL by developing measures 

to address these issues. 

Allow me to introduce myself. I am a 

third year Psychology PhD student working 

in partnership with University College 

London Hospital NHS Trust (UCLH) and 

healthcare professionals like Professor John 

the reduced osteoblastic activity, which 

is believed to be the basic mechanism 

of bone loss in TM, is accompanied by 

a comparable or even greater increase 

in bone resorption, through the RANK/ 

RANKL/OPG pathway. Therefore, the 

role of bisphosphonates, that are potent 

inhibitors of osteoclast activation, arises as 

major in the management of osteoporosis 

in these patients. However, many aspects 

have to been clarified before the broad 

use of bisphosphonates in TM-induced 

osteoporosis: which one? how long? 

and at what dose? The combination of 

bisphosphonates with other effective 

agents has also to be evaluated in 

randomised trials. Other novel agents 

that stimulate bone formation such 

as teriparatide, a recombinant peptide 

fragment of parathyroid hormone, 

strontium ranelate, a second anabolic 

agent, that seem to prevent osteoporotic 

fractures in postmenopausal women, 

are being studied but their effects in 

TM-induced osteoporosis remains to be 

proven. Finally, recombinant OPG, and 

anti-RANKL, which reverses osteopenia in 

ovariectomised mice and reduces osteoclast 

activation in humans with myeloma 

and breast cancer bone disease may be 

another future agent that may help in the 

management of this difficult complication 

of thalassaemia. 

Porter, Dr. Anna Mandeville, Sister Matty 

Owusu at University College Hospital 

(UCH), London, and Dr. Farrukh Shah and 

Sister Emma Prescott at The Whittington 

Hospital, London, to study the HRQoL of 

thalassaemia patients. It is my intention 

to develop and validate a measure which 

assesses the subjective impact of betathalassaemia, 

and then to examine the 

relationship between HRQoL, adherence to 

treatment, social support and self-efficacy. 

The significance of this research 

• The HRQoL measure that I shall develop 

is disease specific, in that it will be 

sensitive to changes in the thalassaemia 

major patient group 

• HRQoL assessments are useful and 

Continues on page 6 ➡ 



valuable especially in determining the 

effectiveness of interventions. 

• HRQoL assessments have important 

implications for clinical trials and 

practice 

• Little is known about the impact of 

thalassaemia on patients’ HRQoL. This 

is where this research will make an 

esteemed contribution to the field. 

In 2002, the UKTS stated on their 

website that a third of thalassaemia 

patients do not comply with 

treatment. That is why the investigation 

of the predictive value of social support, 

self-efficacy and adherence on HRQoL 

in thalassaemia patients has significant 

importance for the following reasons: 

• As life expectancies of patients 

with thalassaemia is increasing with 

adherence to treatment hence the 

understanding of factors relating 

to quantity and quality of life, and 

how factors such as social support 

are associated with HRQoL become 

increasingly important 

www.ukts.org 

medical news 

• As self-efficacy health beliefs and 

behaviour are strong predictors of 

health status in chronic illness it is 

therefore an important area to target 

in clinical practice with thalassaemia 

patients 

• A thalassaemia patient’s decision on 

whether they adhere to treatment or 

not, may or may not be damaging to 

their life quality and well- being. 

Patient A: “I do not know anything 

different to a life which has consisted 

of having blood transfusions in 

hospital every 4 weeks and overnight 

injections every night as well as other 

complications such as bone trouble. 

It is hard coping with that kind of 

treatment and trying to carry on with a 

normal life but given the choice of not 

doing the treatment and facing more 

and more complications, I think I know 

what life I would prefer”. 

Patient B: “Individuals like us, who 

have a chronic illness, have the 

difficulty of not being able to deny so 

well as other people the ever present 

threat of death. In this respect however 

we are also given the opportunity to 

learn from such realisations. It does 

not have to be that death knocks right 

on our door before we start to see the 

reality of our life. We can start from 

now. It does not have to be that we 

realise what we have only after we 

lose it, but unfortunately this is what 

we most often do”. 

By the time you read this article some 

of you may have been approached by 

your healthcare team to participate in this 

study, either by being interviewed and/or 

completing questionnaires. For those of 

you who have done so, I am eternally 

grateful. For those of you who have not 

as yet been approached, I implore you to 

aid me in my endeavours. Research into 

the quality of life of thalassaemia patients 

is still very much in its infancy. I trust that 

this study will inform both research and 

clinical fields. 

Xenya Kantaris BSc; MSc; MPhil 

Brunel University, Uxbridge/UCLH 

DIPEx study of experiences of 

antenatal and newborn screening 

for sickle cell and thalassaemia 

Members of UKTS may like to know 

about a new study based at the University 

of Oxford and funded by the NHS 

Screening Programme for Sickle Cell 

and Thalassaemia. The ‘DIPEx’ research 

group specialises in personal experiences 

of health and illness, and produces an 

award-winning website (www.dipex. 

org) which features video, audio and 

written interviews of people telling their 

stories. People can use the site to find 

practical and emotional support, as well as 

evidence-based information. The website is 

also used to teach health care staff about 

what really matters to people making 

choices about their care or living with a 

particular condition. 

The sickle cell and thalassaemia study 

will involve interviews with people talking 

about what it was like to make decisions 

about screening, how they felt about the 

results, and what they did next. Clips from 

the interviews will be used to illustrate 

the website, which will go live in 2006. 

We are looking for people willing to share 

their stories in an interview, which can 

be arranged at a time and place to suit 

you. Most people are interviewed in their 

own home. We want to include people 

who have decided against screening or 

diagnosis; people who have had carrier 

screening (with positive or negative 

results); and people who have gone on to 

have prenatal or neonatal diagnosis (with 

positive or negative results). 

If you have had to make a decision 

about antenatal screening for thalassaemia 

and would be interested to take part, 

please contact: 

Louise Locock, Senior Researcher, 

DIPEx Research Group, 

University of Oxford, Old Road Campus, 

Headington, Oxford, OX3 7LF. 

Tel. 01865 227008, 

e-mail: louise.locock@dphpc.ox.ac.uk


We thought our readers might like the 

opportunity to get to know one of 

our most active Patrons - star of stage 

and screen Peter Polycarpou. Peter 

has always been in showbusiness but 

became a household name when he 

was cast as Sharon’s husband Chris in 

the popular BBC comedy “Birds of a 

Feather”. Peter is an active supporter 

of UKTS, is always interested to hear 

about our work and always attends 

our events when his professional 

commitments allow. He has recently 

put a lot of work into organising a 

Greek film matinee in aid of UKTS. We 

are proud to have Peter as our Patron 

and greatly appreciate his support. 

www.ukts.org 

profile 

Can you tell us a 

little bit about your 

family - which area 

are they from in 

Cyprus and when 

did they move to 

England. 

My parents are both 

from small villages 

in Cyprus though 

they left them at a 

fairly early age. My 

mother was born in 

Kakopetria and lived 

in Limassol having to 

look after her four 

male cousins from 

the age of about 

nine after the death 

of an Uncle. My 

mother’s mother died 

when she was quite 

young from gangrene 

having been too poor 

to pay for a doctor 

after her leg was 

broken and it was set 

incorrectly. My father 

was born in Korphi and came to England 

when he was still a seventeen-year-old 

teenager. His old village was almost totally 

destroyed by a landslide a few years ago. 

They both came to England in the 1950s 

and met whilst my Father was studying 

to be a draftsman and my mother lodged 

with my paternal grandparents. 

Did you always want to be an actor 

or did you have any other early 

ambitions. 

I always wanted to be a performer. From 

a very early age I entertained the whole 

family whenever there was a social 

gathering. I remember putting a comb 

against my lip and pretending to have a 

moustache. I joined a group that my sister 

Eve and friend Margaret formed and we 

sang at Greek weddings sometimes and 

in Church. I knew I wanted to be an actor 

when I put on a dress to play Mabel in the 

school production of Pirates of Penzance! 

Do you have personal connection to 

thalassaemia? 

Whilst there is no family connection with 

thalassaemia that I know of, I do feel that 

because it affects people from my own 

community in alarmingly disproportionate 

numbers that I have a duty to do what 

I can with my profile as an actor who is 

known in the wider community. I also think 

that because the charity is a small one I 

can do more to help. 

How did you become involved with 

the Society, and when? 

I’m not entirely sure actually!! I remember 

being asked to an event, which I attended. 

I think initially it was because of my profile 

on Birds Of A Feather that I was asked 

to see if I could help raise awareness 

amongst the wider community and try to 

do something to raise money. I have also 

had a long association with The Anthony 

Nolan Trust and because of the profile of 

BOAF I have been able to raise awareness 

amongst Greek-Cypriots and get them to 

come forward and give blood and to get 

on the register as possible bone marrow 

donors. 

What message would you like to give 

to our readers. 

I know I haven’t been much of a patron 

over the last few years but I do try and 

promote the interests of the charity in 

every interview I do and I am actively trying 

to do more as and when I have the time. 

If anyone has any suggestions about what 

they think I could be doing then I am 

always willing to hear from them through 

email (mail@polycarpou.com) or if they 

want to contact me thought the charity.

Symposium for 

Current Issues in 

Iron Overload in 

Rare Anaemias 

Hamburg 14-16 October 2005 

by Dr Christos Sotirelis 

As a representative of the Management 

Committee of UKTS I recently attended a 

conference in Hamburg on Thalassaemia 

and other rare anaemias. This was the first 

such conference organized in Germany, to 

include participation not only of doctors 

but also of patients, carers, parents, 

patient groups and other patient leaders. 

The main reason for attending was to 

find out the problems and difficulties the 

German patients face and to work with 

them to resolve them. Our invitation to the 

conference suggests that in both countries 

there are similar problems and therefore 

the UKTS could work together with local 

news from around the world 

people to offer our know-how for their 

benefit. 

This was a two day Congress held at 

the University Medical Centre Hamburg 

at Eppendorf (UKE) to deal with the 

ambiguity that in Germany there are 

only a small number of haematological 

centres that specialise and have extensive 

knowledge of rare anaemias, although 

patients with these types of anaemia are 

being treated in a variety of hospitals 

nationwide. The aim was to update 

the haematological community on 

the most recent areas in this field. The 

list of speakers included national and 

international guests from as far as Oakland 

- San Francisco and Israel, all recognised 

leaders in their respective fields. 

In a country as big as Germany the other 

role of the Congress was to serve as a 

platform for the patients and their parents, 

giving them the opportunity to meet each 

other as well as the international experts 

and to express their particular problems. 

Specific sessions had been included to deal 

with psychosocial issues of patients as well 

as a round table discussion on better ways 

to respond to the expectations of patients 

Vassilis Dimos and Yannis Chatzis, two of the 

Hamburg delegates 

and parents with haemoglobinopathies. In 

addition, it was possible for many patients 

and parents to see a demonstration of the 

SQUID scanner at the facility of the UKE, 

one of the few centres in Germany to have 

such capability, applied to iron overload 

monitoring for thalassaemic patients. 

Finally, having Hamburg, Germany’s 

historical Hanseatic city and Europe’s 

second biggest port as a backdrop, which 

was on its best behaviour by providing 

us with constant hazy sunshine and 




unseasonably warm weather. 

Germany is a country possessing one 

of the most advanced economies of the 

world and is the strongest economy in 

Europe. Germany has continued to invest 

10.5% of GDP on healthcare (which 

compares favourably with Britain). The 

hospitals, in general, are packed with 

technological sophistication and a high level 

of accommodation comfort. Despite this, 

and although there are officially around 400 

– 450 transfusion dependent patients and 

possibly more, they are spread thinly across 

the whole of Germany, a country with a 

population of around 83 million. This causes 

10 

www.ukts.org 


problems in achieving the best standard 

for everybody. The lack of standardised 

treatment, access to regular specialist 

doctors, knowledge and information about 

the latest developments and contact with 

other patients to share problems and 

socialise have created a sense of isolation, 

and several psychosocial problems in a 

number of patients. To this aim copies of 

our newly published Standards of Care 

document created huge interest amongst 

eminent professors, doctors, and patients 

alike. Our approach to solving similar 

problems in the UK could become the 

blueprint for Germany’s thalassaemics. On a 

happier note, there are many success stories 

of patients married with families, children, 

professional careers and well integrated 

in the society. Working together with the 

German associations will aim to empower 

them to become more effective in resolving 

these difficulties, so as to increase these 

success stories throughout the country. 

Plans are already in development for a closer 

cooperation and exchange of ideas between 

the two groups. 

A big thank you to all the people I 

met for their generous hospitality and 

friendship shown throughout the visit. 

15 th ICOC Conference 2005 

We left London on the evening of 21 April 

2005 and arrived at the Conference City 

of Taichung near midnight on the 22 April 

- the 4 UKTS diplomats, Mike Michael, 

Chris Sotirelis, Costas Kountourou, Costas 

Michael, and myself, the translator. 

The ICOC began on the 23 April. 

The Conference venue, China Medical 

University Hospital, was a short walk from 

the hotel. Conference assistants greeted 

us warmly and led us to the 21st floor, 

where the Conference was held. We 

were welcomed by Prof Peng and Watson 

Lin, who took us to the reception room. 

There we met with some familiar faces 

- George Kontogheorghes, Robert Grady, 

M Agarwal, and A Maggio. We were 

also introduced to local Thalassaemia 

Association President, Mr Wei. With some 

time to spare before the official opening 

ceremony, Mr Wei took us to the 5th floor 

where the local thalassaemia treatment 

centre is and met with the patients and 

parents. 

To the majority of the patients and 

parents, it was their first encounter with 

foreign patients towering at 6 foot. 

Most were shy and chatted very much to 

themselves. 

ICOC 2005 opened with a welcome 

speech from the Mayor of Taichung 

province, who spoke with impeccable 

English. His speech made all participants 

feel overwhelmed with sincerity and hope 

for a better future for the thalassaemics in 

Taiwan. 

The first day was dedicated to patients 

and parents. Sadly, as the conference’s 

main language was English, many patients 

and parents who had difficulty with 

the language chose to wait outside the 

auditorium, chatting among themselves. 

When we stepped out of the auditorium 

for a short break, we were surrounded by 

patients and parents. 

They were anxious for some answers, 

which I was guilty of not being able to 

translate fast enough to answer all of 

them. Some of the questions asked were:- 

“Does Mike still need transfusions? How 

often are his transfusions?” “What other 

treatment does he need on a regular 

basis?” “Does Mike hold a regular job? 

Was there any discrimination against his 

condition?” 

And the constant question raised by 

the President, Mr Wei was:- “Why isn’t 

Continues on page 11 ➡


L1 accepted by doctors? Why aren’t 

there any endorsements to roll it out 

to all patients?” We understood from 

the parents and patients that since the 

approval of Kelfer in the country six years 

ago, many patients were rescued from 

dying with iron overload in the heart. Yet 

there are still doctors refusing to prescribe 

Kelfer for their patients though heart 

iron was present in their MRI scans. We 

spoke with a patient who could have died 

six years ago cardiac complications. She 

expressed her gratitude to the Association’s 

intervention, who recommended her to 

seek second opinion at the China Medical 

University Hospital, had it not been so, she 

would not be alive now. 

We had a lighter moment when one of 

the youngest patients entertained us with 

balloons in the lunch room. 

Prof Peng, who is also the Deputy Head 

of Hospital, with the help from Watson Lin, 

(volunteer from the Taichung Thalassaemia 

Association), translated a few publications 

from TIF into Mandarin, namely “What 

is Thalassaemia?”, “Iron Chelation”, and 

currently “About Thalassaemia”. 

Though the parts on medical treatments 

were eloquently translated, they could not 

translate the hope that has inspired the 

Thalassaemics in the UK and European 

countries to the patients in Taiwan. 

They could not translate the kind of 

achievements that the patients in the UK 

have taken for granted for so many years 

to the patients in Taiwan. The patients 

in Taiwan could not believe that all the 

UK delegates were above the age of 40, 

by now knowing that they experience 

the same pains and receive almost the 

same treatment. They were curious at 

the capabilities and achievements of 

the guests. They were hungry for more 


information and expressed the wish for 

the same standards of treatments in 

the hospitals, same levels of acceptance 

by the society. The biggest regret 

was the language barrier. For those 

who understood English, they were 

overwhelmed by Michael’s speech on 

“What Exactly is Thalassaemia? A Patient’s 

Perspective”. 

Sadly, there was not enough time for 

proper translation into Mandarin on that 

day. 

We woke up to a grey day that 

threatened rain on the 24 April. The 

Association had kindly arranged a day 

out with the patients and parents. After a 

hearty breakfast at the hotel, we headed 

for the famous Fancy World Amusement 

Park in a province two hours from 

Taichung. We arrived at Fancy World 

threatened by the dark clouds and distant 

thunder, but everyone decided to conquer 

the roller coasters and giant Taiwaneye 

rather than retreat to the safety of 

sheltered accommodations. 

Mr Wei, President of Taichung 

Thalassaemia Association has a son 

with thalassaemia. After his birth, not 

understanding a word of English, he found 

Watson Lin, and sent him on a mission 

to find any possibilities of hope. Watson, 

who is a pharmacist by profession, had 

no knowledge of Thalassaemia until then. 

He pooled the other parents together to 

form the Association 12 years ago. Today, 

Watson’s wife, 3 daughters and a younger 

sister, were enrolled into the organising of 

the ICOC and making the guests feel as 

at home as possible. We could not thank 

them enough. 

Though it was the parents who brought 

the level of treatments to today’s standard, 

with up to date treatment regimes free 

of charge, with regret, it was also the 

parents who are the one big hindrance 

to the patients’ achievement of normality 

in life. I could not ignore the fact that 

they still address their pool of patients 

as ‘child-patients’, when most of them 

are in their 20s and a few in their 30s. 

Although the parents read all about ‘What 

is Thalassaemia?’ and understood the 

kind of treatment regime needed, it was 

also the parents who had lived the social 

stigma and family pressure, transferring 

their anxiety and fear to their children. 

The patients grew up into believing their 

lives will be as such, and have achieved a 

kind of normality around the treatments. 

Yet they remain confused by their parents 

education of being different and have to 

be careful about themselves. 

During the day out, I was being 

questioned by both genders on the 

same issue, “How do you make yourself 

attractive to the opposite sex?” even 

though both of them are attractive and 

would have no problems with finding 

themselves partners. Though there’s only 

one patient who’s pregnant, there’s much 

anxiety and questions about treatment 

during pregnancy. One male patient 

shyly asked Mike, how did he manage 

to ‘capture’ me. It seemed amazing to 

them that any ‘normal’ person would 

want to spend the rest of their lives with 

a thalassaemic. We informed them that 

there’s much more to a relationship than a 

condition itself. 

All in all, we had quite a tiring but 

fruitful day and enjoyed ourselves to the 

fullest with the patients and parents. 

Back at the hospital entrance, we 

said our goodbyes and promised to 

communicate. Then it was back to the 


Thalassaemia Matters ...continuing the fight against Thalassaemia 11


hotel to prepare ourselves for the Gala 

Dinner that evening.. With food and 

drinks, everyone was relaxed and moving 

around dinner tables making small talk. 

The 25 April was our last full day in 

Taichung. It was also the day that raised 

the utmost concern to all, the presentation 

of ICL670 by Novartis. At the Conference, 

we met and chatted with representatives 

from Hong Kong. Since the handover of 

the colony from the British to the Chinese, 

treatment and care of thalassaemics 

had deteriorated greatly. The adult 

Thalassaemia Unit was shut down and 

all adult patients referred back to the 

paediatric ward for their transfusions. It felt 

like stepping backwards. That afternoon, 

we sat down to a presentation and heated 

arguments between doctors, patients and 

1 

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pharmaceutical representatives on the 

future of iron chelation. 

In the evening, Prof Peng hosted 

a dinner for all speakers and guests 

from overseas at an authentic Chinese 

restaurant. George Kontogheorghes gave 

a speech, thanking the hosts for the most 

wonderful conference experience. 

On the 26 April, we left for the airport 

immediately after breakfast. Next stop - 

Singapore. 

On the 27 April, we were invited to 

dinner with the patients from Singapore 

courtesy of Thalassaemia Society 

(Singapore). Most of them had met Mike 

and Costas K when they were over in 

London for the MRI T2* trial, so it was 

quick warming up during dinner. 

The questions came thick and fast, 

knowing that the next opportunity to 

meet could be months away. Topics like 

living independently with thalassaemia, 

relationships, careers, having children 

and growing old were discussed. Many 

encouragements came from the delegates 

to participate in the local society. 

Even as the clock struck mid-night, 

everyone was reluctant but had to say their 

good-byes with promises to keep in touch. 

The following evening, we arranged a 

meeting with doctors from the National 

University Hospital and Singapore General 

Hospital at the National Heart Centre. 

Dr Tan Ru-San presented findings from 

the MRI T2* trial conducted in both the 

National Heart Centre, Singapore and 

Royal Brompton Hospital, London (for 

verification), on the young adult patients 

from Singapore. He was confident that 

the MRI machine in Singapore would be 

available for scanning cardiac iron in six 

months time. In terms of cost, it would 

be in the region of S$400, which is 

reasonably affordable to most patients as it 

is recommended to use annually. 

Questions were raised about setting 

up an adult thalassaemia centre. Due to 

various reasons, including the patients’ 

willingness to move, it was a topic the 

hospitals were reluctant to broach. 

However, the discussion today concluded 

positively, with the adult haematologist 

and adult endocrinologist agreeing to 

work together to build a fully functional 

clinical environment comprising of various 

specialists in adult thalassaemia treatment, 

to which patients age 17 and above can 

be referred. 

Though most of these actions were 

initiated by doctors, the President of the 

Thalassaemia Society (Singapore), Derrick 

Lim, agreed to play a supporting role in 

building a bridge between the doctors 

and patients, providing latest treatment 

information from the UK and perhaps fund 

training for the specialists. 

Finally, it was agreed between the 

doctors and Derrick that Thalassaemia 

Society (Singapore) will conduct a bimonthly 

panel to build communication. 

Doctors from Singapore in attendance: 

Dr Tan Ru-San (Cardiologist), Dr Loh Lih 

Hwa (Peads), Dr Loh Lih Ming (Adult 

Endocrinologist), Dr Koh Pei Lin (Peads), 

Dr William Hwang (Adult Haematologist), 

Dr Kevin Chen (Radiologist), Dr Chai Ping 

(Radiologist). 

by 

Mrs Aggie Michael

The 3rd National Anaemia Conference, 

held in Toronto Canada, organised by 

the Anaemia Institute of Canada was 

attended by our Committee member Chris 

Sotirelis, following an invitation to give 

a presentation on the UKTS’ Standards 

of Care for Thalassaemia, received by 

the Anaemia Institute’s CEO Dr. Durhane 

Wong-Rieder. 

The Anaemia Institute for Research 

and Education is a non profit umbrella 

organisation committed entirely to 

generating and sharing knowledge and 

promoting education, research and patient 

advocacy on anaemias. The theme of 

this year’s meeting was “The Future Of 

Chronic Anaemias” and included such 

topics as comprehensive care, updates 

in iron chelation therapy, fertility issues, 

transition from paediatric to adult care 

and a patients-parents psychosocial 


National Anaemia Conference 

– Toronto 24-25 September 2005 

session. Although the program included 

speakers specialising in other types of 

anaemia, the second half of the first day 

was devoted exclusively to thalassaemia 

issues. During the visit it was a great 

opportunity to meet and chat with a 

number of patients in order to find out the 

concerns and problems of thalassaemics 

in Canada. The conference was extremely 

well attended by patients belonging to 

the Thalassaemia Foundation of Canada 

and from elsewhere, as well as by 

doctors from various university hospitals. 

Unfortunately Dr. Nancy Olivieri, one of 

the main speakers and Canada’s renowned 

haematologist cancelled at the last minute. 

During the conference the state of 

treatment for patients revealed gaps 

in current best practice, as well as a 

lack of new doctors with an interest in 

thalassaemia and motivated to make a 

by Dr Christos Sotirelis 

Canadian patients Nancy, Vikram and Angela 

with UKTS Committee member Chris 

career in this field. Additionally, there is 

lack of support and funding in research 

and specialist provision for all the other 

specialisations associated with thalassaemia 

such as cardiac problems, endocrinology, 




fertility, hepatitis, osteoporosis etc. 

Consequently, there are many patients 

from the Toronto hospitals, the biggest 

thalassaemia centre in Canada, as well 

as from elsewhere (Montreal, Quebec, 

Vancouver) going through adolescence 

or in adulthood, who are not receiving 

internationally recognised best practice 

care. In addition Canada and the US, 

until now, have not licensed any oral 

chelation alternatives to Desferal due 

to past controversies, so it is easy to 

understand how psychological and quality 

Sobia and Amjad Afridi with their daughter 

Sabrena 

My husband Amjad and I first saw our 

adopted daughter Sabrena on 19th 

February 2004 at the Edhi Orphanage in 

Karachi, Pakistan. She was at that time less 

than two months old. When the tiny baby 

was put into my arms by the social worker 

we both cried. Then Amjad smiled and 

said to me “We’re taking her home.” After 

two years of trying to adopt a child, it was 

hard to believe that she was really ours at 

last. We stayed in Karachi while I got used 

to feeding and looking after Sabrena. At 

first I was nervous but after a couple of 

weeks I started to relax and enjoy my new 

daughter. 

My husband had to travel back to the 

UK in April as he had to return to work; 

and I went to stay for a while with my 

parents’ family in Lahore before returning 

1 

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of life factors can become very important, 

with negative attitudes prevailing even 

amongst the most courageous patients. 

Unfortunately some of that has contributed 

to the loss of a disproportional number of 

patients within the recent period. 

As a result of this conference and the 

presentation of the Standards which 

were very welcomed and are becoming 

a model for the future, a new program 

of Optimising Therapy developed by the 

Anaemia Institute with the cooperation 

of Stanford University an the University of 

patient news 

A Mother’s Story 

to Karachi in May. This was a very stressful 

time for me as I was coping with the baby 

without my husband’s support; I also found 

the 45 degree temperatures very difficult. 

Back in the UK Amjad was working hard to 

get a visa for Sabrena and finally, to our joy 

her via was issued on 18th August 2004. 

We are eternally grateful for the support 

of our MP Andrew Smith who helped us a 

great deal by his letters and emails to the 

British Embassy. 

In September 2004 we finally arrived 

home in Oxford. By then I had noticed that 

Sabrena was rather pale and quiet and I 

asked the Health Visitor about this but she 

told me not to worry. However I had to go 

to my GP with some medical forms, which 

the adoption agency had given me and 

he ordered some blood tests. Two weeks 

later we had a call from the John Radcliffe 

hospital in Oxford that we should come in 

to see Dr Georgina Hall the next day. By 

this time I suspected that something was 

seriously wrong and when Dr Hall started 

asking us questions I begged her to tell us 

what was wrong with Sabrena. My heart 

was breaking as I was fully expecting her 

to tell us that Sabrena had cancer. In the 

next 20 minutes Dr Hall explained that 

Sabrena had thalassaemia major and about 

the treatment. The following day she had 

Victoria is being adapted for thalassaemia 

with patients being enrolled on it already. 

A further conference planned for early 

next year will also deal with the issues of 

providing a truly Comprehensive Care For 

Rare Blood Disorders. 

My hope is that this visit will provide 

some help and an impetus towards a 

better standard of care. I was very touched 

by the warmth and friendship shown to 

me by everybody in Toronto and I look 

forward to meeting them again, hopefully 

in Dubai, in the near future. 

her first blood transfusion. 

`Those first days were the hardest of 

our lives as we struggled to cope with the 

shock of Sabrena’s diagnosis and come to 

terms with the realities of having a child 

with thalassaemia major. Fortunately we 

had support from each other and from the 

staff at the John Radcliffe Hospital which 

helped us. We are now trying to be as 

positive as we can about our child’s future. 

I feel that one thing which would help us 

would be getting to know other parents of 

thalassaemic children, for mutual support. 

If there are any families in a similar 

situation in the Oxford area I would love to 

hear from them (you can contact me via 

UKTS). 

Despite the shock and grief we suffered 

at Sabrena’s initial diagnosis Amjad and 

I still feel that adopting her was the best 

thing we have ever done. We feel that 

she was given to us by God and that by 

bringing her to the UK we can give her 

better treatment and a better quality of 

life than she could have expected being 

brought up in an orphanage in Pakistan. 

We both feel that we are so lucky and 

blessed to have her and will love and 

cherish her forever. Quite simply, Sabrena 

is our daughter and she was born for us. 

Mrs Sobia Afridi

As we approach the Christmas holidays, 

many people studying look for temporary 

work but you should make sure your 

employer is meeting the National 

Minimum Wage. From1 October 2005, the 

Government announced an increase to: 

Main (adult) rate for workers aged 22 

and over 

£5.05 per hour from 1 October 2005 

(an increase from £4.85 an hour) 

Development rate for workers aged 18- 

21 inclusive 


(an increase from £4.10 an hour) 

16 and 17 year olds 


NB: 16 and 17 year old apprentices will be 

exempt from the new young workers rate. 

Under 16 and Want to Work?? 

If you are 13 years –14 years old and 

UKTS 

congratulates 

thalassaemia 

patient Yameen Rasul, who graduated 

in July 2005 with a First Class Honours 

Masters degree in computer systems 

engineering, from the University of 

Manchester. During the five-year course 

Yameen spent a year in industry working 

for Hewlett Packard and now plans to 

take up an offer with a company based 

in Cheltenham. Says Yameen “For any 

thalassaemic reading this who is thinking 

about going to university or is in the 

middle of a degree course, I say put your 

mind to it and you can achieve any grade 

patient news 

Employment and 

Career Matters 

by Neelam Thapar 

(Neelam is a Careers Adviser at London Metropolitan 

University and also a thalassaemia major patient at 

Whittington Hospital, London) 

would like to work, there are certain things 

that you and your family should be aware 

of. You are only able to work up to two 

hours a day (one hour before school and 

one hour after) On Saturdays, you are able 

to work up to five hours and two hours 

on Sunday but no more than this. You are 

unable to work for 2 weeks in the school 

holidays but for the remainder of the 

holiday, you can work up to five hours a 

day but no more than 25 hours in a week. 

If you are 15 – 16 years old, you can 

work up to two hours a day, one hour 

before and one hour after school. On 

Saturdays you can work up to 8 hours and 

on Sunday up to two hours. In the school 

holidays you can work 8 hours a day but 

you cannot work more than 35 hours a 

week and you will have to have 2 weeks 

where you are unable to work. 

Any careers questions? 

Contact Neelam via UKTS office. 

UKTS congratulates 

Yameen Rasul 

you wish.” Yameen is far from being a 

typical “computer geek” – apart from 

computer sciences his other hobbies 

include model radio control aircraft 

building and flying, badminton and 

socialising with friends. We are sure that 

all our readers will join us in congratulating 

Yameen on his achievements and wishing 

him well in his career. It is people like 

Yameen who remind us that thalassaemia 

need not be a barrier to success. (Readers 

may remember that our last issue 

included a profile of Yameen’s mother, 

Mrs Zanib Rasul, who is the founder of 

the North of England Bone Marrow and 

Thalassaemia Association.) 

Kavi’s & Sakhi’s 

Jump 

In May this year our office received a 

very welcome email from Kavi Raja (a 

22-year-old postgraduate of Nottingham 

Trent University now studying to be an 

accountant). To our amazement and 

delight, Kavi and his younger sister Sakhi 

wanted to do a sponsored parachute 

jump on behalf of the Society! However, 

Kavi and Sakhi, who live in Leicester, 

had a very special reason for wishing to 

support UKTS. In 1983, when Kavi was 

just 3 months old, he was diagnosed with 

thalassaemia major and began receiving 

monthly blood transfusions. But not for 

long – when Sakhi arrived in 1985 she 

proved to be an HLA match for Kavi, and 

a bone marrow transplant was carried 

out by Dr Simpson on 3rd December 

1987 at Leicester Royal Infirmary. Kavi 

now attends hospital for yearly checkups 

and both he and 19-year-old Sakhi, an Alevel 

student, are healthy. 

The intrepid brother and sister team 

carried out their parachute jump on 28th 

August 2005 at British Parachute Schools 

Langar Airfield in Nottingham. As you 

can see from the pictures their brave 

smiles never wavered; and we at UKTS 

can only marvel at their courage! After 

the jump, these impressive young people 

then collected sponsorship donations of 

almost £1,000, which they very kindly sent 

to UKTS in October. We are so grateful to 

Kavi and Sakhi for all the time and effort 

which they put in on behalf of the Society, 

both in doing the jump and collecting the 

money. 

Says Kavi, “I hope the money my sister 

and I have raised helps. We certainly 

enjoyed raising it, the parachute jump from 

12,500 feet was a fantastic experience and 

one we would not hesitate to repeat or 

recommend to others.” 


The UK Thalassaemia Society’s annual 

dinner dance was held this year on 

Saturday 5th November. For the second 

year running we chose as our venue The 

Brewery in Chiswell Street, London EC1. 

As ever, the days leading up to the event 

were hectic ones for the UKTS Committee 

1 

www.ukts.org 

events 

The UKTS Annual Dinner & Dance 

UKTS President Mike Michael with wife Aggie 

and guests 

UKTS supporters Stelios, Sayonara, Alex and Madeleine 

UKTS Asst Secretary Olga Demetriou and Vice-President Menuccia 

Tassone with members Tom Koukoulis and Maria Couppas 

and staff, so when the big day arrived 

everyone was ready for an evening of 

celebration. It is always a great pleasure 

and encouragement for us at UKTS to 

see the dear and familiar faces of our 

supporters; and celebrate another year of 

working for thalassaemia. 

The Brewery is a very spacious and 

attractive venue and the room looked 

beautiful when it was ready to welcome 

our guests. This was largely due to the 

generosity of some very kind friends 

– Koulla Horatta of The 

Wedding Lounge (www. 

theweddinglounge.com) 

lent us some stunning 

purple chair covers 

decorated with silver 

drapes; and Helen Savva 

of Burgeon Floral Design 

(helen@burgeon.co.uk) 

donated beautiful floral 

table decorations, also 

with a purple and silver 

theme. The setting for the 

event was therefore truly 

elegant. 

By the time our guests 

started to arrive, the band 

Melodia were tuned up 

and, just as important, 

the boys who volunteered 

to run the bar for us 

(Chris Paul, Michael 

Kanias, Adam Halwani 

and Kyri Adamou) were 

ready for the onslaught. 

Mike our President made 

a speech of welcome 

and thanks to all those 

who had helped with 

the event. While dinner 

was served, we were 

treated to comedy and 

magic from Andre. Another source of 

amusement, especially for the younger 

guests, was the chocolate fountain kindly 

donated by our event organiser, Tony 

Vorou of One Stop Weddings Ltd. Tony 

also acted as compere for the prize raffle 

draw and football auction which took 

place later in the evening, when most 

guests were glad to stop dancing and 

rest for a few moments (the winning 

raffle numbers appear below). During the 

evening raffle ticket were sold, the table 

decorations were raffled and there was a 

£5-in-the-box draw with the prize of an 

iPod nano. (We thank all the hard working 

volunteers who acted as salespeople 

during the evening.) Another highlight 

of the evening was the lovely voice of 

Ms Angeline Nugera, who entertained us 

while the band took a break. 

As always, the success of the event 

depended on our supporters – all the 

volunteers, those who donated prizes and 

those who took advertisements in the 

programme. Some of these people have 

been supporting UKTS for many years and 

we take this opportunity to thank everyone 

who assisted us. 

1st prize – BA week’s holiday for 2 (inc 

flights) at the Olympic Lagoon Resort, 

Ayia Napa (kindly donated by Olympic 

Holidays) 7114 

2nd prize – A week’s holiday for 2 (inc 

flights) at the Kapetanios Bay Hotel, 

Protaras, Cyprus (kindy donated by Argo 

Holidays Ltd) 6362 

3rd prize – 7 nights (accommodation only) 

for 2 at the Kapetanios Bay Hotel, Protaras, 

Cyprus (kindly donated by Broadway 

Travel) 8494 

4th prize – A return ticket to Cyprus 

(kindly donated by Cyprus Airways) 5676 

5th prize – A return airline ticket to 

Athens (kindly donated by Olympic 

Airlines) 8550 

6th prize – A Harrods hamper (kindly 

donated by the Alfayed Charitable 

Foundation) 5169 

7th prize – A 3-course dinner for 4 inc 

1 bottle of wine (kindly donated by Ios 

Restaurant, Southgate, London N14) 

8294 

8th prize – £100 Marks & Spencer 

vouchers (kindly donated by Marks & 

Spencer Marble Arch) 5170 

9th prize – A birthday cake (kindly 

donated by Aroma Patisserie, Palmers 

Green London N13) 8431

office news 

Freedom Travel supports 

UK Thalassaemia Society 

Freedom Travel have yet again proved their 

ongoing commitment to their fundraising 

partnership with the major UK charities 

including the UK Thalassaemia Society. 

How it works is every time a Thalassaemia 

Society patient or supporter buys a travel 

policy through Freedom Insurance a 

donation is made to the Thalassaemia 

Society. 

The Freedom Travel insurance product 

has been developed in partnership with 

Thalassaemia Society and other charities 

and trusts within the medical sector. It 

is available to all thalassaemia patients 

and people with other existing medical 

conditions and gives them the opportunity 

to obtain travel insurance that does not 

contain any restrictions with regards to 

the cover for the medical and emergency 

expenses. 

Freedom have increased their product 

range to include motor insurance which is 

competitive for the majority of drivers and 

their vehicles. Our household insurance 

can cover for your buildings and contents 

regardless of the location. So Thalassaemia 

Society supporters can take advantage 

of Freedom for all their insurance needs 

and at the same time the Thalassaemia 

Society will continue to benefit from the 

donations. 

For more information enter the Freedom 

website www.freedominsure.co.uk 

Or call the following number 

0870 774 3760 

Standards for the Clinical Care 

of Children and Adults with 

Thalassaemia in the UK 

– how does 

your treatment 

compare? 

This new publication is available from 

our office on request for healthcare 

professionals and thalassaemia patients 

living in the UK. It will shortly be 

available to download free from the 

UKTS website. 

Contact our office on 020 8882 0011 or 

email office@ukts.org. 

In Loving Memory of 

Zach Xenophontes 

Passed away on 19th October 2005, 

in London, due to Thalassaemia and 

Cancer. He was 51 years old. Zach 

leaves behind his wife Beata, three 

daughters: Eva, Maria, Ioanna, his 

first granddaughter Amelia, brother 

and sisters. 

In loving memory of my 

husband Zach 

Dear Friends, 

I would just like to tell you a few words 

on my life with Zach. 

Zach and I met 10 years ago. We had 

instant chemistry even though I couldn’t 

speak a word of English, but as you 

probably know, language is not the only 

means of communication. 

Zach was such a special man. He never 

saw bad in anyone. He was very easy 

going in spite of his illness. Zach was 

brave in everything he did, right until the 

end. He was a fighter, a peacemaker. 

Zach was my champion! Our love for 

each other was so strong and deep. He 

brought so much happiness into my life. 

He gave me strength when I needed it. 

We had wonderful communication and 

enjoyed our travels together. 

Zach I will always love you for the rest 

of my life and you will always be in my 

heart and in my thoughts. Enjoy your 

travels Zach, I am sure we will meet 

again. God bless you. 

Your beloved wife, Beata 

UKTS is grateful to Mrs Beata 

Xenophontes for providing this 

photograph and beautiful tribute to 

her husband. 


1 

www.ukts.org 

office news 

The UKTS Personal Organiser 

UKTS Marathon Men 

UKTS Marathon men Yiannis Ioannides and David Phillips cross the finish line together. Heartfelt 

thanks from all of us at UKTS for their wonderful support. 

• Are you a thalassaemia patient/ 

parent of a thalassaemic child? 

• Do you have the UKTS specially 

designed personal organiser for 

thalassaemia patients? 

If not why not – all it takes is a call to our 

office. 

This valuable aid to keeping your own 

patient – held medical record is FREE to 

patients and parents/carers of children with 

thalassaemia. 

Call 0208 882 0011 to order your 

copy now!

Look after 

yourselves 

– words of 

Winter advice 

At the risk of stating the blindingly 

obvious, Winter is a time when we should 

all be thinking about looking after our 

health. After all, the dark, cold days are 

difficult enough to get through without 

the additional burden of catching a nasty 

virus! So take care to maximise your 

chances of escaping as many bugs as 

possible – wrap up well against the cold, 

eat a good, healthy diet with plenty of 

fresh fruit and vegetables – and be sure to 

get your anti-flu jab! Leading thalassaemia 

doctors advise that all patients should 

be vaccinated against flu every Winter. 

Remember, the flu jab is especially 

important for those patients who have had 

a splenectomy as they may have a harder 

time fighting off infection. Thalassaemia 

patients can get the flu vaccination free of 

charge from their GP surgery. 

Contact your GP now if you have not 

already done so. 

office news 

UKts Welcomes 

neW‑MeMBeRs 

Annual 

Mr M Rahman 

Mr M R Dhanojanan 

Mr K P Kalaw 

Mr D Thakkar 

Mr V Tsioupra 

Mrs S Nicolaou 

Mrs F Allidina 

Life 

Mrs P Gillham 

Mrs A Pedley 

events 

Thalassaemia 

International 

Federation 

• 10th International 

Conference on 

Thalassaemia & 

Haemoglobinopathies 

& 

• 12th International 

Conference for 

Thalassaemia 

Patients & Parents 

7-10 January 2006, 

Dubai, United Arab 

Emirates 

For further details please contact 

UKTS or refer directly to TIF on 

00357 22 319 129 

Conference website www.tif.ae 

DONATIONS 

Our most grateful thanks to all our 

donors for their generosity . 

Mr & Mrs E Louca £30 

Mr S Gandhi £250 

Miss A Gorasia £100 

Prof B Modell £10 

Mr & Mrs B Nathwani £51 

Dr R P Tahalani £111 

Miss B Mistry £62 .11 

Mrs R Ranger £90 

Dr N Rati £10 

Mrs S Kakoullis £5 

Prof Irene Roberts £10 

Ms D Ptohopoulos £25 

Mr B Mamtora £15 

Mr D Patel £50 

Baroness S Flather £10 

Mr Mamtora £25 

Ms M Joseph £10 

Miss N Rehman £10 

Ms X Pavlidou £10 

Mrs G M Harricharan £20 

Mr A Englezou £100 

Ms C Viktoras £30 

Greek Orthodox Church 

of St Anargyre £60 

The Editorial Committee reserves the 

right to alter any articles for publication 

where necessary and accept and 

reproduce or copy on good faith. 

Neither the Editorial Committee or the 

Society accept any responsibility for any 

inaccuracies or omissions. 

The views expressed are not necessarily 

that of the Society. 


membership application form 

UK Thalassaemia Society, 19 The Broadway, London N14 6PH 

Charity Reg No. 275107 

ALL DETAILS AND INFORMATION WILL BE KEPT ON OUR COMPUTERS AND WILL REMAIN IN THE OFFICE AND WILL NOT BE MADE 

AVAILABLE TO ANYBODY OUTSIDE OF THE UKTS. 

If you however do not wish your details kept on our computers please tick this box 

Your Personal Details 

Title (Mr/Mrs/Miss/Ms/Other): 

First Name(s): 

Surname: 

Address: 

Post Code: 

Occupation: 

Ethnic Origin: 

(Optional) 

Membership Required (please tick) 

If you are a patient or parent of a patient please complete the section below 

Patient’s 

Name(s): 

Date of Birth: 

Sex: Male Female 

Type of thalassaemia: (e.g. Major, Intermedia, Haemoglobin H etc) 

Hospital 

where‑treated: 

Address: 

Transfusion 

Frequency: 

Units received at 

each transfusion 

Contact Details 

Telephone: Home: 

Mobile: 

Consultant’s 

Name: 

Consultant’s 

Telephone: 

GP’s Name: 

Address: 

Telephone: 

OFFICE USE: Date Paid Receipt No. Approval Date 

Fax: 

Email: 

www.ukts.org 

Work: 

Are you a: 

Patient Parent/Relative 

Healthcare Professional Association 

Other (Please state) 

ANNUAL (£10.00) LIFE (£100.00) (Please make your cheque payable to U.K.T. Society) 

Blood Transfused (please tick) 

Whole Washed Frozen Filtered 

Chelation (please tick) 

Desferal Deferiprone Desferal & Deferiprone 

Blood 

Type 

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See you in Dubai - United Kingdom Thalassaemia Society

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