Dear Sickle Cell Society Members and the wider Sickle Cell Community

Re. information for members – Blood Donations

We understand how frightening the recent news from NHS Blood and Transplant regarding blood shortages in England will be for you and your family. However, we want to reassure those of you receiving regular blood transfusions, and those who only need blood transfusions occasionally, that these will not be stopped in any way.

Sickle cell anaemia, along with other red cell dependent conditions such as transfusion dependent thalassaemia, diamond blackfan’s anaemia, and others, are categorised as “priority”, meaning individuals living with these conditions that require life-saving blood products will continue to receive them as prescribed.

It is important to note that what may change if blood stocks continue to deplete is the date of the red cells you may be given. In most cases, individuals living with red cell conditions are prioritised to receive cells donated within 10 days, however, if stocks are low or must be outsourced from other regions of the country, you could receive cells that are older. This is entirely safe and does not affect quality of blood itself.

NHS Blood and Transplant have assured us that they are doing everything in their power to resolve the challenges with blood stocks as soon as possible. The Sickle Cell Society will continue to update you as we receive new information.

How can you help?

Please do ensure you attend your blood transfusion appointments. Also, please be aware that fresh blood may not always be available, especially if you have several antibodies, in these cases, hospitals may need to give you older units to treat you safely.

If you have any concerns, please talk to your specialist team, or contact the Sickle Cell Society for questions related to sickle cell disorders.

Please be assured that we are here to support you throughout this challenging time.

John James OBE

Chief Executive. Sickle Cell Society.

Sickle Cell Society Helpline

Email helpline@sicklecellsociety.org or call us on 020 8963 7794 (Monday-Friday excluding bank holidays, 10am-5pm

information for members – Blood Donations Statement

The post A Statement re Blood Shortages in England appeared first on Sickle Cell Society.

T’sharne, a Give Blood, Spread Love squad member shared his experiences of living with sickle cell.

Blood Health looked at the signs and symptoms for different blood health conditions, and the need for greater investment into treatment and featured insightful content from key thought leaders and industry within the haematology community.

Read about the campaign and then check out our work on blood donation and sickle cell at: instagram.com/givebloodspreadlove/.

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We can’t wait to catch up with Ronke Dosumu to hear all about her journey with sickle cell and first-hand experience of having a Stem Cell Transplant.

Register to join on Zoom at https://bit.ly/3qwJGtU

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Register to join at bit.ly/mybabyhassicklecell

The post My Baby Has Sickle Cell: Online Event appeared first on Sickle Cell Society.

Join us this Thursday 17th March at 6:30pm for our online event ‘Give Blood: A Chat with Heroes’.

We will hear from blood donors Brenda Smith and Emmanuel Nola who will be sharing their first hand experiences as life-saving donors.

Register to join at bit.ly/chatwithheroes

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Alongside Terrence Higgins Trust, African Caribbean Leukaemia Trust (ACLT) and One Voice Network, we want to raise awareness of a landmark change to blood donation rules, which means is it easier for more people from a Black African heritage to donate.

It is hoped that more people from Black African communities can now give blood because of the removal of rules around a partner’s potential exposure to HIV in other parts of the world.

Sign up to be a blood donor here: bit.ly/scsgiveblood

There is currently an urgent need for more Black donors in the UK. Each month 1,300 Black donors are needed to give blood to provide life-saving transfusions. Donated blood from people of Black African and Caribbean backgrounds is needed to provide ethnically matched blood for sickle cell patients. Blood is also needed for use in emergencies, childbirth, during surgery, in cancer treatments and for use in other medical conditions.

Since December 2021, donors have no longer been asked if their partner has ever had sex in areas where HIV is endemic – which includes most of Sub-Saharan Africa.

Instead, all donors are now asked the same questions about recent sexual behaviours and are eligible to donate if the risk of past or recently acquired infection is low.

This broader change to how eligibility is assessed initially came into effect in the summer last year and paved the way for a later decision by the Government to remove the question about a partner’s past sexual behaviours abroad.

It came after a review of scientific evidence by the FAIR (For the Assessment of Individualised Risk) steering group on the latest epidemiology and risk of infection, which was led by NHS Blood and Transplant and involved patient groups and stakeholder organisations.

NHS Blood and Transplant has already contacted 12,000 people of Black African heritage who were previously deferred, and who may now be eligible to donate blood to notify them of the change.

The social media campaign will continue to reach out to more people from Black African communities to raise greater awareness of the change, reaching tens of thousands of engaged people from the Black African community through a partnership with ACLT, One Voice Network, Sickle Cell Society and Terrence Higgins Trust.

Tracy Williams, Blood Donation Lead at the Sickle Cell Society, said:

“The importance of a readily available supply of ethnically matched blood to treat people with sickle cell cannot be underestimated. Blood from people with the same ethnic background is vital to keeping those most severely affected by sickle cell alive and well, enabling them to lead fulfilling lives and pursue their goals.

The Sickle Cell Society’s Give Blood, Spread Love project welcomed the removal of the rule preventing anyone with “a partner who has been sexually active in parts of the world where HIV/AIDS is very common” such as “most countries in Africa” from donating blood for a period of three months. In reality, the “three-month deferral period” meant that many potential Black African donors, and others in long term relationships, were permanently prevented from donating lifesaving blood and plasma.

Through Give Blood, Spread Love’s work engaging Black communities on the topic of blood donation, we have frequently met people who have been unable to donate blood due to this rule. We know how important securing trust from Black communities is when asking people to donate, and we are hopeful that this significant and overdue change will encourage more potential Black-heritage donors to come forward, and that the 12,000 people previously prevented from giving blood will recognise this call to action and restart their blood donation journey.” – Tracy Williams, Blood Donation Lead at the Sickle Cell Society

Sign up to be a blood donor here: bit.ly/scsgiveblood

Find out more about the Give Blood Spread Love project here: www.sicklecellsociety.org/blooddonation/

Or follow them on Instagram @givebloodspreadlove

The post More Black African people can now give blood following major change to blood donation rules appeared first on Sickle Cell Society.

This session will be hosted by our lovely Volunteer, Jackie Campbell.

Register to join at https://bit.ly/whatsthelatest

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A Give Blood Spread Love blog

My name is Laurel Brumant- Palmer I am 58 years old, I was diagnosed with Sickle Cell Disease SS at the age of 3 years old. I am a Sickle Cell survivor.

Living with sickle cell disease has been tough; it has been a constant struggle both mentally and physically. Growing up as a child was difficult because that was the period of time that I experienced my worse crisis ever.

I missed so much schooling and felt so different although I had the most amazing parents and siblings that anyone could ask for. My siblings took so much time out looking after me rubbing my joints to try and ease the pain during a crisis. They also made me feel special while at the same treating me no different from one another. My parents wrapped me in cotton wool, as they were lost dealing with a chronic illness they knew little about.

I had very little confidence in myself and I just did not think that there was any future for me. In fact, I really did not want to continue living if this was going to be my life.

The Sickle cell Society became a great support to myself and my family introducing us to other sufferers and their families. My sister worked for the Society for a short period of time, something that is very faint in the back of my beaten memory.

It seemed that anything I did or tried to do was always controlled by a crisis appearing at the wrong time. I could not get excited about anything and if I did you can be sure that a crisis was always around the corner waiting to attack. I have experienced several bouts of pneumonia, many episodes of acute chest syndrome, and my spleen and Gall Bladder have both been removed.

I was diagnosed with Avascular necrosis of the left hip at the age of 21 and Papillary Necrosis of the kidneys. My body has basically been battered by sickle cell disease.

I had several transfusions prior to starting the Exchange Transfusion program. I now believe that I have learnt to accept and live with sickle cell although I still really struggle on a day-to-day basis. I am now a mother, daughter, wife, grandmother, colleague and friend too many but most important I am a survivor and advocate.

I started having exchange transfusions when I was around 16- 18 years old prior to that I was on regular transfusions. This resulted in having a Porta Cath fitted in my chest causing me to experience several severe infections in the line. Having to use a twenty-four-hour pump that consisted of a small butterfly which I had to insert into my tummy was not easy. I had to do the 3-4 nights a week to remove the excess iron that was building up in my body over time. This was known as iron Chelation.

I had two successful pregnancies which both went well, exchange transfusions kept me well through both. I was employed part time for the first time in my life and was transfused during my employment. Got married…went back to study subjects that I believed I could have done better at had I not been continuously hospitalized.

I final completed a degree while working part time at the age of 52. This was something I had always dreamt of achieving. I graduated in 2016 with a 1^st Class Honors in Graphic Design, Visual communication and Illustration.

TODAY I MUST SAY WHO COULD IT BE BUT JESUS and all those many blood donors who donated their blood and saved my life

I express a huge part of myself through my art, which often includes art that portraits pain and sickle cell or reflections of my past journey. I use art to tell my story, to raise awareness and to also help me to stay in touch with my inner self. It is something that I would love to do every day for the rest of my life. You can see my work on Instagram @Laurelbrumant and you can also follow my blog on the Sickle Cell Society Website I also produce regular work.

Creativity was something that I was blessed with and I use it as a form of therapy. My faith in God and my art helps me to escape into a place of peace. This enables me to deal with life’s challenges in a positive way.

The increased demand for some rare subtypes, such as Ro, that are more common in people of Black heritage means we need more black people to become blood donors. Demand for these subtypes is growing as more people have regular transfusions to treat blood disorders such as sickle cell.

Subtypes are important when someone has regular transfusions, as they need blood that matches their own as closely as possible. We need people from all communities to give blood to make sure there’s the right blood available for everyone.

If I have to be honest when I started receiving blood I knew nothing about ethnically matched blood all I knew was that I had to have a blood test several days before I received blood. I knew my blood was being cross-matched so that I received blood from a person with the same blood group as myself. Yes, my lack of knowledge was poor and I don’t ever remember anyone explaining to me the true need of blood donors of black heritage. I needed the blood it was helping me lead a life with less crisis than I was experiencing before.

However, after several years of being on the exchange transfusion I started to have reactions to the blood in the form of high temperature, high blood pressure and coming out in rashes and sometimes just generally feeling awful and unwell. I had to always be administered antihistamine either before or during my blood transfusions to control the reactions I had.

When or if you decide to become a blood donor do not just do it because you want to donate specifically to someone with Sickle Cell donate because you are helping to save a life. Yes, it could possibly go to someone with sickle cell if they have a rare subtype blood group like Ro or it could also go to someone who like me who has an O Positive blood group or it could go to someone who is of black heritage. But even if it does not just remember the good you are doing because by donating blood you are saving lives.

Without blood donations from all communities we would not be able to ensure that there’s the right blood for everyone. I understand that not everyone meets the criteria for giving blood but have you actually thought of giving blood, or even found out what it entails?

Stop making excuses… stop finding reasons why you are not able to do something amazing.

Please ask yourself these questions …Could I give blood? …What is stopping me? … Could I save lives?

Ask yourself seriously …WHAT IS STOPPING ME?

Find out more about Laurel and here artwork here: @Laurelbrumant

Find out more about giving blood here: www.sicklecellsociety.org/blooddonation/

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Wednesday 26th January
6:30pm
via Zoom

Find out more around the history of blood donation and the context for low uptake in Black British communities, how this has impacted attitudes today and blood donation’s particular importance for sickle cell. 

Register to join here: bit.ly/breakthestigmaonline

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