January 2008 ISSUE NUMBER 110 A new venue for the 2007 ... · with Mr Mian Atiq ur Rehman of the Welfare Hand Organisation, Pakistan Winning auction bidder ... Dr Malcolm Walker,

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

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

Medical News . . . . . . . . . . . . . . . . . . . . . 5

Patient News . . . . . . . . . . . . . . . . . . . . . . . 8

UKTS Profile . . . . . . . . . . . . . . . . . . . . . . 10

Office News . . . . . . . . . . . . . . . . . . . . . . . 12

Standing Order Form . . . . . . . . . . . . . . . 15

co

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UNITED KINGDOM THALASSAEMIA SOCIETY

A Charity OrganisationRegistration Number: 275107

19 The BroadwaySouthgate Circus, London N14 6PH

Telephone: 0208 882 0011 • Fax: 0208 882 8618Email: [email protected] • www.ukts.org

24th November 2007 was the date of our final event of the year – our annual dinner dance, which was held for the first time at The Palace Suite, Alexandra Palace, London N22. This year’s event had a black and silver colour scheme, which made the room look very dramatic once it had

been decorated. Once again may we say how much we appreciate the support of our friends Koulla Horatta of The Wedding Lounge (www.theweddinglounge.com – chair covers), Helen Savva of Burgéon Floral Design ([email protected] – flowers) and Rosario Castro-Garcia of 2Destino (www.2destino.com – balloons and bonbonnières). We are more than grateful to these ladies, whose kind donations added greatly to the elegance of the event.

With well over 300 guests present the

atmosphere soon warmed up and the food and wine started to flow, starting with a champagne reception in the foyer and followed by a delicious dinner of smoked salmon, roast lamb and apple tart. Once the food had been cleared away it was time for the partygoers to

get their dancing shoes into gear; and as usual at our events there was no shortage of guys and girls prepared to get up and boogie! During the evening there was a pause in the music (provided by live band “Millennium”) and UKTS Committee member Vava Tsioupra took the floor to get the bidding started for the auction of signed football memorabilia (donated by Chelsea FC, Arsenal FC and Tottenham Hotspur FC). Vava proved to be a very able auctioneer, helped by the fact that he knew his audience and who supported which team! The highest bid was for the signed Arsenal shirt which raised a spectacular £2,000.

Thanks to all our wonderful friends who contributed goods or services or donated prizes, not forgetting the hardest working bar staff in the world, Lucy Boxer, Natalie Couppas and Adam Halwani, who volunteered their services. UKTS Committee members Costas Kountourou and Vava Tsioupra were the lead organisers for the dinner dance; and they would like to say an extra special thank you to our members Koulla Kanias and Mary Zembylas for their help. Last but not least thank you to everyone who bought tickets for the dance or took part in the raffle.

A new venue for the 2007 UKTS Dinner Dance

January 2008 ISSUE NUMBER 110

See page 4 for raffle results and more pictures.

www.ukts.org2 Thalassaemia Matters ...continuing the fight against Thalassaemia

Dear Members,

Welcome to the January 2008 issue of the UKTS newsletter.

We often hear the claim “that people are our greatest asset”. Unfortunately, this is usually an empty slogan, a sound bite rather than a reality. However I feel that in the case of the UKTS the Dr’s; the nurses; the researchers; the volunteers; the staff and the people involved with thalassaemia are the UKTS greatest asset.

These are the people that have tirelessly and selflessly worked long hours have made donations, no matter how small, of time or money, to help us with research, projects or the purchasing of equipment that in the long run WILL overcome thalassaemia.

When the society started some 30 odd years ago we started by aiming for the stars, our target was “a cure for thalassaemia”. 30 years on we are still aiming for the stars, for that cure, but the journey has also changed. Along the way we have seen issues that needed to be dealt with. Issues that have made life better by giving choice to all concerned to parents and thalassaemics of all age groups.

We now have a roadmap, and by working with the government, with the NHS and with our people we can see the beginnings

of a policy that will allow our full potential to be realized.

All of this allows us to aim for Quality as well as Quantity of life and to eventually land on our star, to find that cure.

This year is a conference year and an international conference serves many purposes. It brings together parents and patients, healthcare professionals and researchers from around the world to one central point. It brings friends old and new together; and it provides support to patients, to families and to associations. So in October 8th – 11th 2008 we head east to the beautiful island of Singapore for the 11th International Conference on Thalassaemia & Haemoglobinopathies and the 13th International TIF Conference for Thalassaemia Patients & Parents

http://www.thalassaemia2008singapore.org/

As usual we would like your comment on any of the stories in this issue or if you have any comment to do with thalassaemia in general then email us [email protected]. Until the next issue,

Mike MichaelPresident UK Thalassaemia Society

A word from our President

Mike Michael President

Christos Sotirelis Vice-President

Vava Tsioupra Secretary

Katerina Read A Secretary

George Constantinou Treasurer

Philip Agathangelou A Treasurer

Andy Charalambous Committee

Chris Fassis Committee

Costas Kountourou Committee

the UKtsManagementcommittee

Aims & Objectives

of UKTS

■ The relief of persons suffering from thalassaemia.

■ The promotion and co-ordination 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 well-wishers to exchange ideas and information.

■ To raise by any legal means the funds required for the above activities.

www.ukts.org Thalassaemia Matters ...continuing the fight against Thalassaemia 3

latest news

CONFERENCE ANNOUNCEMENT

Thalassaemia– a childhood condition comes of ageA FREE conference for doctors and nurse specialists

5 CPD credits awarded

Presented by

UK Thalassaemia Societyin association with

The Royal Society of Medicine

10th June 2008

The New Lecture TheatreRoyal Society of Medicine

1 Wimpole Street, London W1G

Contact the UKTS office now for your registration form and further details

Tel: 020 8882 [email protected]


latest news

WINNING RAFFLE NUMBERS1st Prize 3458A week’s holiday for 2 people (inc flights)

at the exclusive, 5 star Le Meridien Hotel,

Limassol, Cyprus (donated by Olympic

Holidays)

2nd PRIZE 52347 nights (accommodation only) for 2 at the

Kapetanios Bay Hotel, Protaras, Cyprus

(donated by Broadway Travel)

3rd Prize 75922 return airline tickets to Athens (donated

by Olympic Airlines)

4th Prize 24251 return flight to Cyprus (donated by

Cyprus Airways)

5th Prize 3816A Harrods hamper (donated by the Alfayed

Charitable Foundation)

6th Prize 5324A silver/white gold plated charm bracelet

set with cubic zirconia (donated by V

Jewellers of Cockfosters)

7th Prize 3583£100 gift vouchers (donated by Marks &

Spencer Marble Arch)

8th Prize 3903Signed book “Geldof in Africa” (donated

by Bob Geldof)

9th Prize 5387Signed DVD “Jamie’s School Dinners”

(donated by Jamie Oliver)

10th Prize 40142 girls’ diesel T-shirts (donated by

Monkeyfish)`

11th Prize 4015£20 gift voucher (donated by Jessops

Photography)

12th Prize 4769Herbalife skin products (donated by Chris

Kanias)

13th Prize 16443-piece Virgin jewellery set (donated by

Rachel Wasson)

UKTS President Mike Michael with Mr Mian Atiq ur Rehman of the Welfare Hand Organisation, Pakistan

Winning auction bidder Alex Arsenal

Costas Kountourou, co-organiser of the dinner dance

Mary Zembylas & Vava Tsioupra conduct the auction

Left - UKTS Coordinator Elaine Miller with Photoulla Wilson 1st prize raffle winner. Right – raffle and auction prizes


Rationale: This fellowship is designed for junior doctors who are working with thalassaemia patients and would like to obtain further training in management of thalassaemia and its associated complications.

Duration: The Fellowships last from 6 months to 1 year. A postgraduate qualification in paediatrics or general medicine is desirable. The Fellowships are offered subject to approval by the department of haematology and cardiology.

Programme/EntitlementsThe programme will comprise a number of options some of which will be compulsory:

Compulsory:1. Session with the clinical librarian to

learn how to perform searches to access papers and data.

2. Attendance at the open teaching sessions at Whittington Hospital and any relevant departmental sessions in reproductive endocrinology, cardiology or haematology.

3. Teaching for teachers (TIP) courses at the Archway or UCL campus, subject to availability and acceptance by the course organiser.

4. Handbook/log book of cases seen5. Attendance at specialist thalassaemia

clinics with Dr Shah, Dr Walker (cardiology), Dr Chatterjee (reproductive endocrinology and osteoporosis) as well as combined multidisciplinary clinics being set up in paediatrics and diabetes.

6. Some time on the thalassaemia day unit with Sister Emma Prescott looking at routine transfusion practice and management of Hepatitis C positive patients.

7. Design and development of one chapter of a patient management-teaching tool.

Visiting Fellowship Programme

medical news

The Whittington Fellowship in Thalassaemia

Supported by the UKTS and Whittington Hospital NHS Trust

Course Organisers: Dr Farrukh Shah, Dr Bernard Davis, Ms Emma Prescott

Supervising Colleagues: Dr Ratna Chatterjee, Dr Malcolm Walker, Dr Andrew Robins,

Dr Maria Barnard, Professor Dudley Pennell, Mr Abdul Adamu and Mr James Dalton.

This is an exciting new programme of clinical training being offered to doctors interested in look after patients with thalassaemia.

The Whittington is the largest centre in the UK for thalassaemia and is internationally recognised as a centre of excellence. Services have been developed over the years to provide education and training in all aspects of care for patients with thalassaemia and we work closely with specialist colleagues at University College London Hospitals and the Royal Brompton Hospital.

The Whittington hospital has a state of the art thalassaemia centre and there are specialist clinics for thalassaemia patients. These clinics include combined paediatric thalassaemia clinics and a combined diabetes clinic, specialist reproductive endocrinology and osteoporosis clinic run by Dr Ratna Chatterjee and a specialist cardiology clinic run by Dr Malcolm Walker.

Successful applicants for the Fellowship programme will attend all the thalassaemia

related clinics to learn about outpatient management of thalassaemia, cardiac iron loading, liver disease including hepatitis C, diabetes, osteoporosis and fertility. Opportunity will be provided for applicants to attend the Royal Brompton hospital to learn about MRI technology and its clinical application in thalassaemia. In addition time will be spent in the blood transfusion laboratory to learn about blood transfusion safety and safe blood administration on the thalassaemia unit.

The successful applicant will be attending courses to learn how to perform literature searches and will be given the opportunity to attend the TIP’s for teacher’s courses run at the Archway campus. In addition they will be expected to undertake a mini research project or audit in a field of their interest, which will be presented at the Whittington grand round. If the research project is of a high standard it shall be submitted as an abstract at international meetings.Duration: The Fellowships last from 6 months to 1 year.Eligibility: Visiting Fellows should have general medical or Paediatric experience and at least 2 years experience in working with patients with Thalassaemia. A postgraduate qualification in paediatrics or general medicine is desirable. Continues on page 6 ➡

Dr Farrukh Shah


medical news

Optional:Which we will strongly recommend that all fellows undertake the first option and at least one of the remaining 3 options:1. Research project, which will be

decided by the fellow and may cover haematological, cardiological or endocrinological components of the training programme depending on individual interests.

2. Public health: some time may be arranged with the community haemoglobinopathy counsellors, the antenatal and neonatal screening programme staff to look at how screening has been implemented in the UK.

3. CMR: some time may be arranged to visit the CMR unit at the Royal Brompton Hospital to learn about this

technique and its role in management of iron overload.

4. Blood transfusion safety: Some time may be arranged for fellows to look at blood transfusion safety in the haematology laboratory and at the regional blood transfusion centre as well attend the hospital blood transfusion committee meetings and work with the transfusion nurse specialist.

Financial Arrangements: The Fellowship does not include the cost of accommodation or travel, and Fellows would be required to make all their own arrangements in this respect and to meet these costs, plus all living expenses. If available subsided accommodation may be provided at the nurses’ home at the Whittington hospital. The following fees

are payable for a Visiting Fellowship: £100 to cover administration costs.

Applications: Application forms are available from Elaine Miller ([email protected]) at the UK Thalassaemia Society or Siprosa DaCosta at the Whittington Hospital ([email protected]). The application form should be completed and returned with a detailed curriculum vitae, two references for this application and a list of the options you would like to undertake, to Siprosa DaCosta, Haematology Secretary, Department of Haematology, Whittington Hospital, Magdala Avenue, London N19 5NF or email to [email protected]

The history of comprehensive data collection in the UK for hHaemoglobin disorders goes back many years, however despite the best efforts of many enthusiastic

and committed individuals we still in the beginning of 2008 do not have reliable information on the most basic aspects of these disorders. We do not know how many people in the UK have hHaemoglobin disorders , nor where they live or what type of disease they have got. This information is vital for the improvement of treatment services nationally.

This last couple of years have seen rRed cell disorders assume a higher profile amongst those who commission commission hHealth services and set health spending priorities. This increased profile has come about in part because of the screening programme and ,in part because of the great efforts of organisations such as the UK Thalassaemia Society and Sickle Cell Ssociety in representing their members’ views. There

is also a simple recognition by health service planners that the present services available to patients and families with red cell disorders are not equitable and represent a poor investment in the long term health of these groups.

Information is power. At present no-one has the information which will allow the logical planning required for the improvement of services in future years and this is now proving to be a major barrier to our efforts ,this is now proving a major barrier in our efforts to improve services. I am pleased to say the Department of Health has identified money to collect basic data on the numbers of patients affected, where they are and what they have got. This will be undertaken by a very experienced group from Manchester who run the UK Haemophilia Ddatabase. Its web site — www.ukhcdo.org list — is worth visiting , it is a very professional and well run set up. This initiative will move forward this year , a patient information leaflet is being produced now and everyone will be given this. All those affected will have the option to opt out of but we would stronlgystrongly urge you to participatethis initiative and obviously their details would

not be then entered. The group involved in Manchester are sensitive to all the issues of confidentiality that such data involves and have discussed this in detail with the UK Forum on Haemoglobin Disorders as weill as UKTS and the Sickle Ccell Ssociety.

The first stage is to define what data is needed, produce patient information and establish a steering group to oversee the process. Patient representatives are included on the steering group and thisThis stage is almost complete. The next stage will be to collect pilot data before beginning to collect data nationally. It is hoped that the Department of Health’s funding for this process will continue long enough to get it firmly established. There are several directions in which the initiative could move after its first year including developing audit and patient management systems. We are keen to draw on the interests and skills of others previously involved in this area in making both the initial data collection process and any future developments a success success. I would urge you all to support this initiative , I do believe it is a real step in the right direction and will help us to improve the quality of service over the years.

Proposal for UK Haemoglobinopathy RegistryBy Dr Philip J . Darbyshire, Consultant Paediatric Haematologist,

Birmingham Children’s Hospital and Chair of the UK Forum on Haemoglobin Disorders

Continues from page 5



A day trip organised by the young patients of the Haemoglobinopathy Unit of the Birmingham Children’s Hospital.

Our haemoglobinopathy teenagers were set the task of organising a trip out for themselves, some rose to the challenge, most notably Nabeel and Shadab, who were the clear winners. With scenes on the phone reminiscent of “The Apprentice” TV

show - or was it more Only Fools and Horses ?? But with the deal clinched and discounts got, a day of Paintballing was decided on.

So on the 13th August 2007 we met at the Thistle Hotel Birmingham to meet the President - well, it was Mike Michael, President of the UK Thalassaemia Society, so almost as important! Mike had kindly travelled up from London with

his son Brandon, to talk to our teenagers about their condition, with the added insight of having thalassaemia himself. The discussion ranged from how their condition shouldn’t limit their lives in what they can achieve and how anything was possible. Shadab just wanted to be famous, Mike suggested he join a boy band, which resulted in him falling off his chair ! Mike talked about how much better the treatments were today, as he

had only had Desferal, an iron removing drug, from the age of 12. And with the introduction of the new Exjade medicine, no more needles or pumps! So the future for our patients should be getting a lot better. After some posh nosh, we hopped on the coach across the border to Dudley, for the fun to begin.

Most memorable moments were Rikki almost climbing the police riot van to win one of the games, only to be splattered by Phil, but revenge was sweet. Asiya and Fatima, the only girls to come, really got into splatting the boys. And lastly Hassan, taking on the whole of black team, Rambo style, after his team had all surrendered. A great day was had by all, especially the black team led by Phil who were the eventual winners, though he was shot in the back by one of his own team! You know who you are !

So we returned to Brum, bright orange, like we had all been to a Tantastic salon! Nursing our many bruises and egos, to the tune of “When are we going again?”Many thanks to all who helped to organise this event.

Battle in Birmingham

The fearsome Birmingham paintball crew

patient news


Anton is a thalassaemia patient and is a long-standing Board member of the Thalassaemia International Federation. This article is adapted from a presentation he gave at the 1st European Workshop on Thalassaemia (organized by TIF) on 26th November 2007. Anton is from Palestine and currently lives in Cyprus.

Since thalassaemia is a chronic condition, psychosocial support is as essential to the patient and their family as the treatment itself. The patient and their family have to know how to face the illness and its lifelong and difficult treatment. Not understanding the condition and its treatment might lead to neglecting the treatment leading to increased risk of disease complications, poorer survival and a bad quality of life.

Psychosocial support involves many people; those who give it and those who receive it. Some of those who give it are:

Doctors and Nurses: Caregivers like doctors and nurses who should have good knowledge about the disease, its treatment and above all a good understanding of its psychological and social consequences.

They, especially the doctors, have a great responsibility in providing information to the parents and patients about the illness. They should help their patients to accept their illness, take care of themselves, facilitate a normal lifestyle, and encourage self-esteem.

There are many reasons that make it against patients’ interests that these caregivers rotate and the patient keep having new number of them every now and then. Time improves the relationship between the patient and these caregivers, which encourages communication between them and the patient. Their understanding of the health, psychological,

and social condition of the patient becomes better. As well, the patient grows to trust his/her caregivers, which makes it easier to talk and express feelings, not forgetting the importance of the consistency of treatment.

Trained Social Workers: Social workers can be of great help in giving support to the patients and families. They should have some understanding of the condition and its consequences on the patient and families.

In many countries, social workers are involved in many aspects of life of youngsters. Their responsibilities watching over a thalassaemic are bigger and more complicated. Some hospitals or day care units have social workers employed to help in watching over patients. The responsibility of these social workers then starts at the day care unit.

Home and community of the thalassaemic should not be of less importance to them, they should be aware of how patient and their family are accepting and facing the problem, as well, they should investigate about the patient’s relation with the community, like friends, brothers and sisters, teachers, and others that are directly involved with the patient’s life.

Social workers should help and encourage thalassaemics to lead a normal life. They should help, and encourage them to go to school, university and, if their help is still needed, help them in finding a decent job.

Experienced Parents and Older Thalassaemics: After many years of treatment and dealing with the psychological and social problems of their children, parents learn a lot and become well informed and educated about the condition and its problems. The same

applies to older patient that get to know about their condition and problems and figure out the way to overcome them and deal with the extensive demands of the treatment. Long experienced parents and patients can extend their knowledge to the new parents and young patients.

Recipients of psychosocial support are a bit more limited but at the same time very important.

Parents: parents usually are shocked when the doctor tells them about their child; and the lifelong treatment necessary to a thalassaemic. They find it difficult to understand and usually ask many questions repeatedly. The feeling of guilt is that they have given to their child such a condition while they are healthy is common among these parents. Taking the child to the hospital for the repeated transfusions and puncturing the skin with Desferal needles besides thinking about the treatment and future can be a source of pain and anxiety to them adding to it that in some countries family has to bear a part of the treatment cost.

To explain to the parents the problem of their child, the doctor should choose a considerate way and correct words. He should be patient to answer their repeated questions and explain to them why they should not feel guilty. They should be guided and encouraged to have a positive attitude about it, have a high self-esteem, and feel deserving of help. They should seek help to become in control, if they lose it for sometime, and accept their new and unexpected responsibilities.

Other Members of the Family: first relatives to the thalassaemic such as brothers and sisters are usually affected as well. It is usually painful to have a chronically sick brother or sister. They are

Psychosocial Support for a Thalassaemia Patient

By Anton Skafi

patient news

Continues on page 12 ➡


Swapna is the mother of two young daughters who both have thalassaemia major. Each time we have spoken I have been impressed by her positive attitude and determination that her girls will not be disadvantaged by having thalassaemia. I find her to be an inspirational lady – in fact, every time I speak to her on the phone she cheers me up as her voice always sounds as though she is smiling or about to laugh! We are so grateful to Swapna for sharing her experiences and thoughts with our readers. Her children are under the care of Dr Paul Telfer and his staff at the Royal London Hospital. Elaine Miller

About meI am just your average mother of two girls, who are aged three and five years old, and who happen to both have thalassaemia major. They are not twins as a lot of people mistakenly think – possibly because I dress them the same. I know what you’re thinking, but it makes my life easier when buying for them and dressing them. Plus, I think it looks nice and I avoid the ‘but I want what she’s got!’

I work part time for the Ministry of Justice as a Technical Officer. And, since becoming a mum, I am part of the furniture at the Royal London Hospital!

Memories of becoming the mother of a child with thalassaemia.Becoming a mum for the first time, regardless of the fact that that child has thalassaemia is a major shock to the system. The one thing I used to dream about was (actually, I still do) is having one night of sleep without ‘staying alert and

ready’ for ‘action’. I had the same hopes and fears as all mothers. That is, how will I know what to do and will I be able to do it, will she grow up normal, etc.

My elder daughter had her first transfusion when she was about eight weeks old and roughly a year later she started on the Desferal infusions. I did get upset and emotional when she had her first transfusion. Even now, I have my moments, especially if the girls seem to be having a hard time. But when I am strong they are strong.

The first time my second daughter had her transfusion, at the age of about eight months, was just amazing to watch. Before the transfusion she had a blue/grey colour, very lethargic, and not even seeming to want to cry! About 20 minutes into the four hour transfusion she looked, sounded, and behaved like a completely new baby!!

I found it harder to deal with the nightly Desferal infusions though. My daughter appeared to regress in front of my eyes and all she wanted was to be held. She would barely sleep and wanted to be held by me (no one else would do) all night. That was absolute murder for me because I really do not do well on little sleep, forget about no sleep! You can only imagine when my younger daughter started having her infusions, and I was sandwiched between them all night. Oh, the physical aches and pains.

I found it heartbreaking the first time I heard my two year old daughter say “Oh Allah, please make me better!” At the same time I was happy that she knew that Allah was there and he is the one to turn to for help.

Now things are a lot better, my daughter and I have decided that if we are very

good and put the Desferal on without fuss and regularly, may be the doctor will say we don’t have to put it on five nights a week. And, if we pray hard may be Allah will make things easier and we won’t have to use any medication at all – Insha Allah (God willing)!

Despite everything, I love my girls and I love being their mum. When I hear ‘I love you, mummy!’ well, what can I say!!

Were you and your family aware of thalassaemia before your daughters were born?I had a little card to say that I had thalassaemia trait. Other than that, my family and I knew nothing about thalassaemia or anyone with the condition. When I found out I was expecting and there was a possibility of the baby having the condition, I tried to find out as much as I could about the condition and its treatment. However, all that research didn’t prepare me fully for the impact it would have on my life and the lives of my family members.

One positive outcome of the girls having the condition is that I have become closer to my parents and siblings. I do not know what I would have done without their help and support.

The days we are in hospital for the girls transfusions (they have them on the same day so that it is easier for me), are like family trips or picnics. In the early days both my sisters would be there at the hospital waiting for me and the girls. Now they wait till mid morning to come. During the course of the day various members of my family turn up just to see how we are doing and if we need anything.

Mrs Swapna Uddin

ukts profile


How well do you think the medical staff have supported you and your family? I ‘happened’ to the nurse specialist during my pregnancy. Since then, whenever I need something – whether it’s advice, supplies, or just to talk, I know I can call her. But then, I suppose it would be hard not to respond to some one who is ‘in your face’ all the time!

“We are going to visit Jo!!” is the answer people get from the girls when they ask what they are going to do on the Friday of their transfusion. Jo used to be, until December 2007, the play specialist on the children’s ward and in time a friend. In the early days, canulating the girls was a difficult and traumatic experience not just for the girls, but for me as well. Jo was a mercy from Allah to me and the girls!

Now the girls are so calm and (almost) tear-free when they have blood tests and have their canulas inserted, even the doctors, nurses, and phlebotomists are surprised.

We have been going to the same ward for about five years now and we know and get along with all the nursing staff and nursing assistants. When we are there they all make it a point to come over just to say hello and talk to us. There are a lot of doctors that pass through the ward, and its really nice, because I meet them after they leave, on other wards, around the hospital or in the street, and they always stop to ask about the girls.

How do you manage as the mother of a family with 2 thalassaemia children?I would be lying if said it was easy, but then, it’s actually not as difficult as it sounds. When you’ve been through it all with one child, you are more confident and relaxed (barely) the second time round. That’s because you know roughly what to expect and how to do things. The key to success is advance planning, sticking to routines, and if it still doesn’t go to plan, take a chill pill!

The good thing about having both the girls with the condition is that they can help and support each other better than anyone else. I do find though that where my younger daughter ‘idolises’ her older sister, for want of a suitable expression, she wants to do and have every thing the same.

Because both my girls have the condition, I know no different so therefore I can’t compare to what it would be like had they not had the condition. I think it might have been have more difficult to handle if they were not the same.

The thing that has helped me the most is my Faith. There is an Islamic saying-

“Allah does not burden a soul with more than it can bear”

With this in mind I know I can cope. I also believe that you should try your best and whatever happens, happens for the best.

How are the girls doing at school? Do you experience any difficulties in explaining their condition to other people, for example, teachers?The girls love going to school and are doing very well. My older daughter has just reached the point where she wants to read every thing from the script on the side of her pen to the advert on the train wall! (Some of which is quite inappropriate for a five year old). My younger daughter is trying to master Jolly Phonics and is pointing out ‘sounds’.

Because the girls miss school more than other children, i.e., every fourth Friday, I do a lot of home schooling with them. I also pester the teachers on the children’s ward at the hospital to provide work for the girls when they are there so that they do not fall behind due to missing school for hospital appointments and they are not just staring at the TV all day.

Before the girls started school, I made it a point to meet with the school/nursery head teacher and class teacher, to make them aware of the condition and discuss what support the school can provide. I regularly meet with the teachers for progress updates. Generally, I have found the teachers quite helpful and keen to understand the condition.

Sometimes though I have felt that I don’t want to have to explain the girls condition to some people (usually other parents) as they start looking at them as if the girls are ‘sickly’ or ‘weird’. At those times I do feel I have to clarify that the condition does NOT mean they are mentally impaired in any way or can not lead a normal life. At such times I try and show them parallels with asthma or eczema or an allergy of

some sort which are common conditions requiring treatment for life just like thalassaemia.

Any advice to other parents of children with thalassaemia?If you believe that because of having thalassaemia your children are sickly and not capable of achieving things then they will believe it and not achieve. But, if you have confidence and support them then they will believe in themselves and achieve. Don’t use the condition to stop them doing things other ‘normal’ children are doing. If they cannot or do not want to do something then they will decide.

Here’s a poem by Deborah Short, which I think is so appropriate:-

Give a child a great educationYou give them the worldGive a child science and mathYou give them accessGive a child a sense of wonderYou give them joyGive a child poetry, paint, l.e.d.s,

aluminum foil and sparklesYou give them creativityGive a child accountabilityYou give them integrityGive a child an understanding of spiritYou give them faithGive a child an entire communityYou give them responsibilityGive a child your undivided timeYou give them securityGive a child a life by exampleYou give them the map for successGive a child hugsYou give them love!

What are your hopes and dreams for the future?I have such a long list of hopes and dreams that I won’t bore you with it. I won’t say that I don’t worry about the future because I do. However, there is this Islamic saying which means try your best and then have faith in Allah.

“Tie your camel and then have faith”

And here endeth the monologue, if you’re still awake!!!

ukts profile


usually affected by the stress caused by the parents during following the treatment of their ill child and their concern about his/her health and future. The extra care given to their brother or sister might as well make them feel neglected, or parents might unintentionally neglect them for real. Adding to the above, in some countries, having a chronically ill member in the family can, label the whole family and expose it to some social isolation especially in marriages.

Patients: A patient usually faces many stress factors. Some of these factors are the uncertainty about the future, or health future, like the development of the condition and its complications. There are other factors as well, like delayed puberty and growth, sense of being different from peers, and sometimes altered appearance. These might embarrass the patients or make them want to isolate themselves.During the course of life, the patient has to deal with many challenges. The most important of these challenges, is the condition itself, its complications, heaven forbids there are any, and the demanding treatment of the condition especially the daily chelation that takes hours and hours. Family, caregivers, and other figures of authority that, though their support and protection can be another source of stress.The patient so often has a low self-esteem and is hot tempered and often has dysphoric moods, these, sometimes can be related to low Hb. Maintaining high haemoglobin, that gives the patient the feeling of being healthy or strong, can often alter these feelings or at least minimize them. The high haemoglobin can improve attention and concentration, at work, school and many other aspects of our lives. Since the beginning, the manner that the parents and other members of the family are dealing with the condition and the patient can be decisive on the future and the way the patient faces the condition and its effect on daily life. The patient since the beginning has to be treated as a normal person, not different from his or her healthy siblings at home, or peers at school. He or she should be taught to accept the condition and its treatment “because this is what keeps the patient

going, and the more s/he can adhere to the treatment the more normal s/he will be and the better quality of life s/he will have.” The sooner condition management and treatment is shifted from parents to patients the better it is for the patient, as it gives them the sense of independence, and relief for the parents and other members of the family.

Who Can Help Us More?At the end, it is good to see all of these people; parents, relatives, caregivers, peers and friends, teachers, colleagues at work and many others support us. This has a great effect on us and of course it is a relief to see all of them care, but no matter how much they care or help, there is no one that can help us better than us. Since the moment management of the treatment is shifted from our parents to us, it becomes our responsibility on how things turn at the end. We can notice how we feel when our Hb is low and what affect it has on our daily life and how things become when it is high. It is up to us to understand that chelation, though its effectiveness cannot be noticed quickly, is at the end, what keeps away many complications and keeps us as normal as possible. It is up to us to understand that this is what we are, this is our life and we have to make the best out of it. How we turn out to be is at the end in our hands.

Finally a little quotation from a study

”The thalassaemics in our sample not only had normal psychosocial development, but scored better than their normal peers in tests investigating social adjustment, self esteem and self description. This is surprising since their daily life is markedly different from that of normal individuals.” B.Zani, A. DiPalma, C. Vullo J.Adol., 1995, 18:387-402

This is one of the reasons why we should not be sad or sulk about being thalassaemics, obviously thalassaemia, somehow, has made us stronger people than many others.

office news

On 26th September 2007 we held our inaugural UKTS golf day at Muswell Hill Golf Club, London N22.

Our golfing fanatics assembled at 8.15am for breakfast, followed by a 9-hole round of golf. Luckily the weather was kind to us and after lunch they played an 18-hole round of golf, following which they were only too pleased to relax and enjoy an evening meal and presentations. UKTS was represented by Committee members Andy Charalambous and Chris Fassis, both keen players. The tournament was won by sporting enthusiast Zack Delevic, who ran the London Marathon for UKTS in 2006.

The golf day was a really fun event which was greatly enjoyed by all who participated and we thank everyone who supported us by attending.

Our grateful thanks to Muswell Hill Golf Club and to Mr Eddie Michael who helped us to organise this event.

Golf Day

Group photo

Andy Charalambous and Chris Fassis

Andy Charalambous and Zack Delevic

Continues from page 9


Travel insurance– New telephone

numberCould all our members please note that Freedom Insurance Services Ltd, who offer travel

insurance which covers thalassaemics, have changed their telephone number to

01223 454 290.

You can also visit their website on

www.freedominsure.co.uk

announcement

We have heard from members all over the UK that, although their doctor wants to prescribe the new oral chelator Exjade, it is not available to them due to lack of funding provision. In other cases, however, we know funding has been granted. This leads to the grossly unfair “postcode lottery” situation in which decisions about treatment are taken out of the hands of experienced clinicians and instead made by NHS management or accountants.

If you have been told that, although your doctor would like to prescribe Exjade for you it is not available, we would urge you to contact the Society. We would be happy to assist you by writing letters of support.

Please contact the office TODAY by calling 020 8882 0011 or email

[email protected]

EXJADE– have you been

refused?

On 4th December 2007 UKTS ran a training session for 15 first year medical students from St George’s University. UKTS Coordinator Elaine Miller gave a medical presentation “Introduction to Thalassaemia”, followed by Committee member Katerina Read, who gave a

presentation on her personal experience of living with thalassaemia, followed by questions from the audience. Each student was also given an information pack.

The feedback forms from the students were extremely positive. UKTS welcomes the opportunity to help inform students about this often neglected and misunderstood condition. We hope that all the students will remember us if they come across patients who have thalassaemia; whether they go on to become GPs, surgeons or – hopefully – join the ranks of our hard working but overstretched red cell haematologists!

If you are involved in the training of medical or nursing students and would like to arrange a similar session please contact Elaine Miller on 020 8882 0011 or [email protected]

N of England Bone Marrow & Thalassaemia Assoc Conference 30th March 2008, Manchester.

For further information telephone 0161 273 7200 or email [email protected]

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Training for medical students at UKTS

The Thalassaemia International Federation (TIF) would like to announce that patients wishing to receive FREE copies of

their quarterly magazine should contact the TIF office directly.

Please contact :Thalassaemia International Federation

P.O. Box 288072083 Nicosia, CYPRUS

Email [email protected]. 00357 22 31 91 29

Notice from the Thalassaemia International Federation

STOP PRESS STOP PRESS STOP PRESS

Katie Read giving her presentation


UKts Welcomes neW-MeMBeRs

AnnualEve Alley

Ioanna LamprouAdam Stylianou

LifeKuldeep Panesar

Our most grateful thanks to all our donors for their generosity .

Mr A Ali £10

Prof Elizabeth Anionwu £40

Ms R Calcutt £50

Evander Lodge £455

Mr S Gandhi £300

Mr & Mrs Ghani £100

Mrs M Hau £114

Mrs A Katsouris £50

Mr P Kyriacou £100

Learning Skills Council Social Evening £193 .17

Mrs E Louca £60

Mrs E Louca (in memory of Athina Chrystomou) £30

Network Housing Group Social Club £100

Miss M Purvis £10

Mr P Ramlakhan £10

Mr & Mrs Soni (The Gold Centre) £46

Dr R Tahalani £50

Mrs P Temple £15

DONATIONS

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.

Announcement from theThalassaemia International

FederationThe 11th International Conference on Thalassaemia and Haemoglobinopathies & 13th International TIF Conference for Thalassaemia Patients and Parents

Will take place on 7-11 October 2008

at the

Suntec International Convention& Exhibition Centre, Singapore.

For further information please consult the TIF websitewww.thalassaemia.org.cy

Thanks to Marilyn & AlexA big thank you to UKTS members Marilyn and Alex Hau who raised £100 for the Society by making Christmas cards and bags of magic reindeer food! These were sold in St Peter’s

CE Primary School, South Weald, Brentwood and Crowstone Preparatory School in Rochford, Essex; as well as The Log Cabin in Brentwood and Aura Health and Beauty in Upminster.

We are very grateful to Marilyn and Alex and all who supported us by purchasing their Christmas goodies!

A new way to support your Society

Eagle-eyed readers will have spotted a new feature on the inside back page of Thalassaemia Matters – a standing order form! We have introduced this feature so that our many generous supporters can pledge their donations on a monthly basis without the trouble of writing cheques and posting them off. All it takes is one final trip to the post box with the completed form.

You will see that there are tick boxes for £2, £5 and £10 per month or you can specify any other amount you choose. Remember, UKTS would not be able to continue its work without voluntary donations – any amount you can spare will be most gratefully received! If you are a UK tax payer don’t forget to tick the gift aid box, which will mean that we receive an additional 28% directly from the tax man, so your donation of £10 is worth £12.82 to UKTS!

Thank you in advance for your generous support.

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To the Manager [Name of Your Bank]

Address

City Postcode

Please pay: Bank of Cyprus UK, PO Box 17484, 87 Chase Side, London N14 5WH

For the credit of: UK Thalassaemia Society, Registered Charity No: 275107 Sort Code 30-00-42 Account Number 00593812

The sum of : £2.00 £5.00 £10.00 Other £ _____________________ (amount)

On the ___________________ (day), ___________________ (month), ___________________ (year)

And thereafter every month until further notice and debit my account accordingly.

Name(s) of account holder(s) to be debited:

Account Number:

Sort Code:

Signed Date

Signed Date

Your Address

Tel Number:

Email address:

I would like tax to be reclaimed on my donation under the Gift Aid Scheme. I am a UK tax payer and pay an amount of income tax and/or capital gains tax at least equal to the tax that can be reclaimed on my donation. Please tick.

YES NO

Please call 020 8882 0011 if you have any queries. When completed, please return to:UK Thalassaemia Society, 19 The Broadway, Southgate Circus, London N14 6PH.

We will then send this form on to your bank.

Thank you for your valued support.

Please Support The UK Thalassaemia Society by Making a Monthly Donation

STANDING ORDER FORM

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membership application form

UK Thalassaemia Society, 19 The Broadway, London N14 6PHCharity Reg No. 275107

Your Personal Details

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

OFFICE USE: Date Paid Receipt No. Approval Date

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

First Name(s):

Surname:

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

Patient’s Name(s):

Hospital where‑treated:

Address:

Date of Birth:

Consultant’s Name:

Consultant’s Telephone:

GP’s Name:

Address:

Telephone:

Transfusion Frequency:

Units received at each transfusion

Blood Type

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

Sex: Male Female

Address:

Contact Details

Telephone: Home:

Work:

Mobile:

Fax:

Email:

Are you a:

Patient Parent/Relative

Healthcare Professional Association

Other (Please state)

Membership Required (please tick)

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

Post Code:

Occupation:

Ethnic Origin:(Optional)

Documents

January 2008 ISSUE NUMBER 110 A new venue for the 2007 ... · with Mr Mian Atiq ur Rehman of the Welfare Hand Organisation, Pakistan Winning auction bidder ... Dr Malcolm Walker,