The voice of the Sickle Cell CommunitySickle Cell Disorder is the world’s most commonly inherited blood condition

The Society Crosses the RiverGoing on Holiday

World Sickle Cell DayThe Early History of Sickle Cell

Sickle Cell SocietyISSUE 11 | SUMMER 2013

At the outset I would like to extend a further warm welcome to our new CEO John James; as together

with the Directors, staff, volunteers and members we continue our journey for a Society able to respond to the 21st century problems we face.

I hope 2013 is bringing some level of success to our members and patients. This year I would like to see membership grow to better reflect the number of people suffering from Sickle Cell Disorder (SCD). Your support is a major asset to the Society which can be leveraged with funding bodies. It is only with your support that we can generate a compelling position of strength which ‘helps us to help you’ as one of our members kindly pointed out at a recent patient and carers seminar.

I would encourage everybody to get their family, friends and neighbours to become members in support of the patients, carers and their families that the Society seeks to serve.

For 34 years the Society’s mission has been to enable and assist individuals with a sickle cell disorder to realise their full potential. In the last year, as with every year, we had our annual children’s holiday for 30 kids, campaigned for free prescriptions, supported video productions explaining SCD and what it is like to live with it, raised awareness in Parliament, with schools, employers, GPs, health and Social Services etc. We funded several students; including a student at medical college, and provided nearly £10,000 to those in need of basic house hold items from cookers to washing machines, and often beds to sleep in; can you imagine being

ill with sickle cell and not even having a proper bed? This is why ‘we need you to help us to help you’ because we at the Society want to do more.

We certainly live in interesting times. We are responding and being proactive to the change taking place as a result of the new health care commissioning arrangements. We are rising to the challenges that the next year will bring. We have always appreciated the demographic shift that is occurring with one in every 450 white British people now being born with the sickle gene, and will consider actions to map the impact.

At this time the economy is on its downers, there are cuts in both public and private investment. The Society does not underestimate the level of hard work we face ahead, and have recast our strategic plan to respond to the challenges to ensure we remain fit for purpose. We retain the highest recognised quality standard for information and stakeholder engagement in our publications called the Information Standard. We have also reviewed our Constitution. Though the past 12 months have had their difficulties, we continued to add value to those suffering from sickle cell disorders, and we are emerging ready for the future.

At this point I would like to take the opportunity to thank everyone that currently supports the Society. Your hard work and dedication serves as an inspiration to what can be achieved by committed people.

We mourn the loss of one of our champions Dr Adebayo Olujohungbe, a key Medical Advisor to the Society, who sadly passed away in May. He was well remembered at our Thanksgiving and Remembrance Service in June, and alongside the likes of Dr Africanus Horton; the first to write

about the illness in 1874 (see Iyamide Thomas article page 17 of the December newsletter), Dr Adebayo Olujohungbe shall be remembered.

We are most grateful to Ade’s family, in particular to his beloved children James and Olivia, for their request that donations be made in Ade’s memory to the Sickle Cell Society.

A special thanks to all those individuals and organisations who have raised funds on our behalf. I also thank the many that have exerted themselves for the cause running and riding in events like the London Marathon and British 10K. Having run alongside these people I appreciate the effort and preparation involved in raising money in this way. Our Marathon runners Leroy Campbell, Dr Jane Logan and her daughter definitely deserve a special mention, alongside Ayo Oyebade of Hendon Rotary Club, Helen Ward our Skydiver, and Ade Adebisi our professional Rugby player.

We hope you agree it has been a busy year and as ever I am grateful for the hard work of our Board and Staff and supporters. We welcome suggestions from you as to what you would like and ways in which we might be able to raise the funds to support such initiatives in these difficult times.

I would like to thank those that back the Society’s mission. I would like to thank those that share the dream of a universal cure for sickle cell that has gotten us here. And thank you all again for supporting the journey we are on, because together we will turn the sickle into a smile.

Have a great summer and rest assured we are working hard to assist individuals with sickle cell disorder to achieve their full potential.

Interim Chair’smessage

JB4- Just Before Marriage

Mr Kye Gbangbola MBA, Interim Chair

The Redeem Christian Church of God (RCCG) Living Water Parish in South Wimbledon recently launched a project

called ‘JB4 – Just Before Marriage’ whose mission is to educate single persons about sickle cell disease before courtship and marriage in order that they can make informed choices based on knowledge of their haemoglobin genotype. Iyamide Thomas, Regional Care Advisor for the Society who also leads on the NHS Sickle Cell

and Thalassaemia Screening Programme’s outreach on sickle cell has forged a good working relationship with RCCG and was keynote speaker at the launch and sickle cell awareness day held on 22 June. The Screening Programme’s film the Family Legacy was shown to an audience of approximately 100 people, followed by a Q&A session and a drama in what was a successful and informative event. The JB4 Project will also be launched in Nigeria.

L-R: Esther Ifinnwa, Specialist Nurse Councillor, SE London Sickle Cell

and Thalassaemia Centre, Pastor Modupe Afolabi, RCCG, Iyamide

Thomas, Sickle Cell Society, Pastor Wale Afolabi, RCCG

NEWS REVIEW2 | SICKLE CELL SOCIETY

After spending my first six months in post, I thought you would find it helpful for me to share a few

reflections and highlights from those first six months of 2013.

It has clearly been a busy and exciting few months from which I have learned a great deal about our organisation, its challenges and the motivation that drives our many stakeholders and friends to continue to support the Society.

We remain in challenging economic times and this will be the case for the foreseeable future. This is exactly why I remain committed to building a strong, financially sustainable Sickle Cell Society that remains true to its founding ambitions and is fit for the future. We have much to do, but the journey has started over the last six months.

I am pleased to announce that we now have in place a 2013-15 Fundraising Strategy. Over the coming weeks and months we will provide the necessary support and focus to enable progress and achievement of our fundraising objectives for the current financial year. I would like to take this opportunity to thank those individuals and organisations that have kindly contributed or raised funds for the Society. During the last 6 months we have received £60,538.02 income from individual donations, corporate donations, payroll giving and community fundraising events. I would also like to extend my sincere thanks to the family of Adebayo Olujohungbe for the request that donations be made in Ade’s memory to the Sickle Cell Society following the sad loss of Ade in May this year.

A lot of my time has also been spent on rebuilding and developing new relationships with stakeholders. Why is this important? Our standing and reputation matters! We must be a trusted advocate for individuals with sickle cell disorder and their families but also a trusted and reliable partner to our funders and other stakeholder partners. For example there have been widespread leadership changes to the NHS system from 01 April 2013; these include specialised commissioning services, NHS Sickle Cell and Thalassaemia Screening programme, the establishment of NHS England, Public Health England and new Clinical Commissioning Groups (CCGs). Key leaders and supporters of the

work of the Society under the old system have moved on as a result of the recent changes. Not only do we need to adapt and change to reflect the new operating system but we also have to build new relationships.

I have recently attended 3 Patient Support Group meetings. These were useful opportunities to share the strategic priorities of the Society going forward, listen to the issues Support Groups have and consider how the Society can work together with Support Groups to enable the voice of the sickle cell community to have greater impact.

Our top three priorities for the current financial year are: delivery on our fundraising objectives aligned with strong financial discipline, further development of stakeholder relationships and build our leadership, governance and strategic capability at board level. These are part of the exciting journey of getting us fit for the future. In pursuit of these objectives I am pleased to say that we have already achieved the following;

1. Proposed new constitution

2. Secured membership of the Clinical Reference Group for Haemoglobinopathies- Specialised Commissioning

3. Undertaken a number of specific fundraising and awareness activities

4. Agreed on a new website to make our front of house communications more reliable and up to date

5. Undertaken activities to celebrate World Sickle Cell Day in partnership with NHS BT and other stakeholders

6. Secured continued important joint work with the NHS Sickle Cell and Thalassaemia Screening Programme for 2013/14

I am genuinely excited about this journey and believe we are already making progress. At the time of writing the weather has been excellent, so have an enjoyable summer- weather permitting!

This year’s World Sickle Cell Day on 19 June saw the Sickle Cell Society joining forces with NHS

Blood and Transplant (NHSBT) to call for more blood donors from the Black community. Since the United Nations passed a resolution in December 2008, 19 June has been the annual international day of raising awareness about sickle cell disease. What better way to highlight awareness of the condition and the treatment people sometimes need than our very own Society Chief Executive John James rolling up his sleeves to give blood! Regular blood transfusions are often a vital part of treatment for people living with sickle cell especially those that have had previous strokes. People from the same ethnic backgrounds often share the same blood types however current levels of Black, Asian and mixed-race blood donors are very low. Recruiting more Black, Asian and mixed-race donors helps to collect enough of each blood group, so John and Hellen Adom, (a sickle cell service user who has benefitted from blood transfusion) hope that their appeal on 19 June will help inspire more people from the black community to give blood.

John James and Hellen Adom help raise awareness of sickle cell disorder and the need for blood

donation

For more information about becoming a blood donor or to make

an appointment to attend a local session, either call 0300 123 23 23 or

visit www.blood.co.uk

WorldSickle Cell Day 19 June

CEO’smessageJohn James, Chief Executive

SICKLE CELL SOCIETY | 3NEWS REVIEW

I believe that 2013 is the first time in its 34 year history that the Sickle Cell Society has held its Annual Service of Thanksgiving

and Remembrance in South London! On 9 June 2013, Reverend Canon Owen Beament, Vicar of All Saints Church in New Cross, Lewisham (it is no coincidence this is also my church!) welcomed approximately 100 people to the South London church, including friends, service users, nurse specialists and other supporters of the Society. Special guests included Princess Deun (producer / presenter of the ‘Arize Breakfast Show’ on BEN TV), actress Ellen Thomas (Eastenders, Rev etc) and members of the Krio Descendants Union London (KDU) who added a lot of colour to the occasion with their colourful Sierra Leonean ‘Print’ attire. The theme of this year’s service was ‘support from the community’ and this was ably reflected in the enjoyable address given by our guest preacher Pastor Christian Parker by his use of the Good Samaritan story. After what many described as an enjoyable and informative service, guests networked and were treated to light refreshments. What a worthwhile venture crossing the river had proven to be! As one KDU member put it a few days later “come back to South London next year and you will get even more people”. We just might take her up on that come 2014.

(All photographs by Mr Ade Daramy)

The Society Crosses the River - Thanksgiving 2013 held in South London.

By Iyamide Thomas – Regional Care Advisor, Sickle Cell Society

Mr John James and Mr Michael Parker in amongst the KDU Ladies!

Special Guests Ms Ellen Thomas (L) and Princess Deun

Father Owen welcomes guests Pastor Christian Parker giving his powerful address

CEO of the Society Mr John James gives the Vote of Thanks

Mr Kye Gbangbola (Interim Chair) gives an overview of the Sickle Cell

Society

A Guest lights a candle in memory of a loved one

Mr Wilfred Wright, Chair of the Krio Descendants Union with other members of the congregation

Mr Kye Gbangbola (Interim Chair), Mr Patrick Ojeer (Trustee), Mr Michael Parker (President) and Mr John James

(Chief Executive Officer)

Service user Pamela Gyebi-Ababio entertains the crowd with her beautiful voice

4 | THANKSGIVING 2013

From 1st April 2013 the NHS Sickle Cell and Thalassaemia Screening Programme (NHSSCTSP) changed structure and was integrated alongside the other newborn and antenatal non-cancer screening programmes all based under the umbrella of Public Health England. On 19 March the NHSSCTSP Steering Committee (of which Dr John Sentamu, Archbishop of York is Chair) held its meeting at York Palace however the Archbishop could not attend as he was in Italy for the new Pope’s installation.

On 22 March 2013 NHSSCTSP had its Annual Review Day and official ‘goodbye’ to Dr Allison Streetly its Programme Director. Cathy Coppinger who worked with the Newborn Blood Spot Programme is now Programme Manager for the NHSSCTSP and the Society looks forward to continuing its close working partnership with her and her team.

NHSSCTSP Team with Dr Allison Streetly

Members of the NHSSCTSP Streering Committee with Dr Allison Streetly (front row centre)

NHSScreeningProgrammeNews

By Iyamide Thomas – Regional Care Advisor, Sickle Cell Society

A Guest lights a candle in memory of a loved one

Mr Wilfred Wright, Chair of the Krio Descendants Union with other members of the congregation

Members of the Krio Descendants Union

Service user Mr Ade Sawyer (R) and son

Mr Kye Gbangbola (Interim Chair), Mr Patrick Ojeer (Trustee), Mr Michael Parker (President) and Mr John James

(Chief Executive Officer)

Service user Hellen Adom lights a candle whilst Mr and Mrs Asamoah

wait in line

Service user Pamela Gyebi-Ababio entertains the crowd with her beautiful voice

Carer Eniye Udabor prays for ‘the sick, suffering and oppressed’

Service user Jayson Kupoluyi prays for ‘those with sickle cell disorder’

SICKLE CELL SOCIETY | 5

In the last issue of our newsletter (Winter 2012) I wrote an article called ‘Let the Story be told: Sickle Cell Disease a

Sierra Leonean Discovery’, and spoke of Dr Africanus Horton, a nineteenth century Sierra Leonean medical doctor who in 1874 reportedly gave the first written account of various features of a condition we now know to be the disease ‘discovered’ by Dr James Herrick and subsequently called ‘sickle cell anaemia’. Finding out this information about Africanus Horton (and the fact that I am also from Sierra Leone!) prompted me to tell the story of what I consider to be the ‘real’ discovery of sickle cell. Since that article last December two very interesting things relating to Dr. Africanus Horton’s and Dr James Herrick’s early history of sickle cell have taken place, so let me update you!

A Tale of Two Tombstones

Let’s start with Dr James Herrick whose first recorded case of ‘sickle cell anaemia’ in 1910 was in a student called Walter Clement Noel who lived in the USA but was originally from Grenada. Walter Clement died in 1916 and is buried in Grenada so when John James our Chief Executive of the Society announced he was going home to Grenada on holiday in April little did he guess that I would subsequently send him on a mission to check out Walter Clement Noel’s tombstone! John was provided with all the details he needed including a photograph of the tombstone and the location of the cemetery thanks to an article by Professor Graham Serjeant in one of our old newsletters. What John came back with was an amazing update to the first known case of sickle cell anaemia in the West and more! Here is his story:

“I am a regular visitor to the island of Grenada, the country of my birth.

During my last visit in April 2013 I visited the grave of Walter Clement Noel in Sauters, Grenada.

Sauters is located in the parish of St Patrick’s. It is very familiar to me and I have visited the town on many occasions over the years on my regular trips to Grenada. In particular I have visited Sauters cemetery where Walter Clement Noel is buried as well as Leapers Hill (sometimes known as ‘Caribs Leap’) where the original Carib natives of the island leapt to their death in the 1650s rather than face enslavement by the French colonialists.

Whilst I was aware of Walter Clement Noel prior to joining the Sickle Cell Society, I can honestly say that I was not aware that he

was buried in Sauters. In my previous visits I had not noticed any signage or honorary plaque to mark Walter Clement Noel’s burial at the Sauters cemetery site. However on my last visit in April this year, I am very pleased to say that there is a prominent honorary plaque at the entrance of the cemetery in Walter Clement Noel’s memory. This is a good thing!

Despite his sickle cell, Walter Clement Noel graduated from Dental School and set up a dental practice in the capital of Grenada; St George’s. He died aged 32 from health complications and was buried next to his sister and father in Sauters cemetery.

Honorary plaque now at entrance to Sauters cemetery to commemorate Walter Clement Noel’s status as the first recorded

case of sickle cell disease (in the West)

Tombstone of Walter Clement Noel (left) with that of his father (right)

This was not my only connection to sickle cell during my trip to Grenada. I had planned to meet up with an old friend and great friend of the Sickle Cell Society Jean Griffiths (former Specialist Nurse for sickle cell). Unfortunately Jean was in the UK during my time in Grenada. However Jean who runs

the Sickle Association of Grenada, kindly arranged for me to meet her Executive Board of the Association. I had the privilege of addressing them during my stay in Grenada. Sickle cell affects approximately 8-10% of the population of Grenada. I applaud the excellent work the Association are doing in challenging financial times in the interests of individuals with sickle cell and their families”.

(Mr John James, Chief Executive Officer, Sickle Cell Society)

The Oldest book I have held

Next we go to Dr Africanus Horton whose book ‘The Diseases of Tropical Climates and their Treatment’ I located thanks to a friend who works at the British Library. The book ‘is almost 130 years old and I was able to plough carefully through the chapters of Dr Horton’s amazing medical knowledge searching for anything that would point to a description of sickle cell! There was so much stuff and as a non-medic I spent hours going through the contents including chapters on ‘anaemia’, ‘chronic rheumatism’ and ‘splenic enlargement’. Like others before me I also concluded that what Horton described in his chapter on ‘chronic rheumatism’ was almost certainly sickle cell. He anticipated by decades some of the features of sickle cell disease that others later recognised; such as the fever associated with crisis, the rheumatism which shifted from joint to joint and ‘metalized’ to internal organs causing severe sometimes fatal complications. Most importantly Horton also mentioned the “long continuance and frequent recurrence of symptoms”, the constant abnormality of blood and the peculiar tendency for the condition to be prevalent among natives of the Tropics who then suffered more in the rainy season. Dr Africanus Horton gathered most of his evidence whilst stationed as a British Army Surgeon in Ghana (it is reported he read the book’s galley proofs while he was engaged in the Ashanti War of 1873!), where long before Herrick’s description of sickle cell Ghanaians had recognised it as a dangerous hereditary condition which they called by various tribal names. Reading through Dr Horton’s book not only made me certain that some credit should go to this man for one of the earliest descriptions of what became known as sickle cell disease, but it also made me immensely proud to see in print the work of this Sierra Leonean born 19th century individual educated at home as well as in the UK who in his time had excelled in the field of medicine and much more!

By Iyamide Thomas – Regional Care Advisor, Sickle Cell Society

The Early History of Sickle Cell – An Update

NEWS REVIEW | SICKLE CELL SOCIETY6 | SICKLE CELL SOCIETY

It was with great shock that we heard the sad news that Dr Adebayo Olujohungbe, Medical Advisor to the Sickle Cell Society,

passed away on Sunday 26 May 2013 in Winnipeg, Canada, one week short of his 50th birthday.

We are most grateful to Ade’s family, in particular to his beloved children James and Olivia, for their request that donations be made in his memory to the Sickle Cell Society.

Known to his many friends as Ade or Bayo, he was born on June 3rd, 1963 in Ibadan, Nigeria to the late Funsho and Olabisi Olujohungbe. A graduate of King’s College Lagos, he went on to study Medicine at University College Hospital, University of Ibadan, Nigeria. He pursued more

specialized study in the United Kingdom in Internal Medicine (1989), Haematology (1999), and Pathology (2006). During this process he received a PhD (Doctor of Medicine) from the University of Birmingham for critical illuminating research on multiple myeloma in 1999. Diagnosed at an early age with sickle cell anaemia, he chose to not only become a doctor but one who would devote his life to combating and containing the disease. He has since become one of the world’s foremost experts in the field of haematology and related oncology, who was well sought after and highly respected by his peers. Dr Ade, as he asked his patients to call him, was not only a great researcher, but a wonderful doctor who was fully committed to the care and compassion for his patients. He was also a wonderful role model for all those affected by the illness and a brilliant father and an all round family man.

One of his most notable achievements was his leadership and chairmanship of the development of the first ever Standards for the Clinical Care of

Adults with Sickle Cell Disease in the UK, launched in 2008. This outstanding work was directly acknowledged by the then Prime Minister of the UK, Gordon Brown. Our deepest condolences go to his family. We will miss Ade’s enthusiasm, charm and devotion to the cause of those affected by sickle cell disease. We are comforted by the immense legacy he has left us. May you rest in peace dear Ade.

To donate to the Sickle Cell Society in memory of Dr Ade you can use your mobile phone and text BAYO63 £5 and send to 70070. You can also donate through ‘just Giving’ http://www.justgiving.com/dradeolujohungbe?fb_xd_fragment

Donating through Justgiving is quick, easy and totally secure. It’s also the most efficient way to make a donation the Sickle Cell Society gets your money faster and, if you’re a UK taxpayer, Justgiving makes sure 25% in Gift Aid, plus a 3% supplement, are added to your donation. Thank you for your support.

As we approach the summer (hopefully the recent good weather is here to stay!) and some of us start

taking holidays it seems a good time to include an article on air travel precautions for people with sickle cell. I had planned to compile this information some time ago. One book I often source for information is ‘How to Live with Sickle Cell Disorder’ by Olu Akinyanju and Adebayo Olujohungbe. Ade passed away recently and I will forever treasure the signed copy he gave me. As further tribute to Ade I have reproduced below an extract he wrote in their book on air travel.

The A – K of Traveling

You can minimize the risks associated with air travel by taking certain precautions, some of which seem very obvious.

A. Have a good knowledge of the place you are travelling to and accessibility to health care, vaccines required, and the need for anti-malarials or other special precautions. This

information can usually be obtained from a travel clinic or a local medical officer of health (public or community health department or a sickle cell association). It is also a good idea to get an introductory letter from your doctor summarizing your health care information. This will be useful if you develop any illness at your destination.

B. Travel when you are free from infection and/or crisis.

C. Get a good night’s sleep before your departure.

D. Avoid drinking alcohol, tea or coffee (contain caffeine) during the flight as they have a tendency to dehydrate you.

E. Avoid smoking

F. Drink plenty of non alcoholic fluids prior to traveling, on board the aircraft and a few days after arrival.

G. Before you travel, inform the airline of your condition and make a precautionary request for extra oxygen on board if needed.

H. When booking your flight, buy travel insurance to cover any emergencies.

I. Get up and stretch your legs from time to time during the flight. Walk up and down the aisle a few times to improve your circulation.

J. Avoid long haul flights. If possible, have a few days stop over in between distant locations.

K. Watch out for unusual symptoms of pain or breathlessness, and alert the cabin crew immediately, if you feel unwell.

Lastly look after yourself during your trip and have a great holiday!

In Memory of Dr Ade Olujohungbe

Going on HolidayBy Iyamide Thomas – Regional Care Advisor, Sickle Cell Society

By Professor Elizabeth N Anionwu, CBE FRCN, Patron, Sickle Cell Society

NEWS REVIEW | SICKLE CELL SOCIETY SICKLE CELL SOCIETY | 7

The Sickle Cell Society went to Asda Park Royal to raise awareness of sickle cell disease and assisting their customers with bag packing for a small donation. The two intensive and physical days took place on Friday 10th & Saturday 11th May 2013. We were very fortunate to have excellent volunteers from the local community to cover the two days that included Sheradine Fearon and Yamini Patel who are regular volunteers as well as students from a local secondary school in Brent. Students included Itzel Canas-Perez, Peter Dempsey, Sophia Ramen, Archie York and Milo Fisher from Queens Park Community School. Thanks to everyone’s hard work we managed to raise £806.00.

SCS News ReviewWe would like to know your news, views and comments for inclusion in the next edition.

Editorial Team: Iyamide Thomas, John James, Kalpna Patel, Kye Gbangbola Carlotta Olason, Oumou Diallo

Sickle Cell Society54 Station Road, London NW10 4UAT: 020 8961 7795/4006 F: 020 8961 8346Registered Charity No. 1046631 Company No. 2840865

Please send your contributions toinfo@sicklecellsociety.org.

www.sicklecellsociety.orgThe Sickle Cell News Review is an open forum to individuals and interested groups and organisations, therefore opinions and ideas expressed by authors are not necessarily those of the Sickle Cell Society.

Run to the Beat Powered by Nike+ Half Marathon has a huge array of DJ’s

performing on the day, with 14 Music Stages scattered around the course so you can Run to the Beat! The course is 13.1 miles which starts and finishes at the stunning Greenwich Park. You can walk, jog or run the route as long as you finish the course within 3.5 hours.

This year Run to the Beat Powered by Nike+ Half Marathon takes place on Sunday 8th September 2013 starting at 9.45am. The Society has only 9 places remaining, the race entry fee is £20 and

all participants are requested to raise a minimum of £300 in sponsorship. Each runner will receive a Chip Timing, Official Race Photograph, Finishers Medal, T-Shirt, a Goody Bag, a Certificate, an Official Event Program and you will have the opportunity to meet and mingle with the rest of the team at a local venue after the race.

The deadline to enter the race is Friday 26th July 2013. Please contact the Fundraising Manager, Kalpna Patel by email to kalpna.patel@sicklecellsociety.org or call 020 8963 7793 for a booking form.

Powered by Nike+ Half Marathon on Sunday 8th September 2013

Bag Packing atAsda Park Royal

Run to the Beat

L-R: Sheradine Fearon, Donna Turner and Yamini Patel

raise awareness and funds