About The PM Society Awards

The PM Society Awards has been running for 37 years, it is an event in the healthcare calendar that showcases the best creative work the industry has to offer. It is the longest running and largest awards event in the industry calendar, taking place annually in March and recognizing creativity, innovation and impact across a range of creative communications work.

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We celebrated Valentine’s Day about five weeks ago. Did you know it is reportedly the most celebrated day around the world besides New Year?  Saint Valentine’s Day is apparently named after a saint called Valentinus who it is said was imprisoned for performing weddings on soldiers forbidden to marry and for ministering to Christians who were persecuted under the Roman Empire.  Legend has it that he healed the daughter of his jailer and before his execution he wrote “from your Valentine” as a farewell to her!  By the 15^th Century, 14 February had become associated with romance and the tradition of courtly love and had pretty much evolved to what happens now – an occasion when couples (current or would-be!) express their love by presenting each other with flowers, chocolates, romantic gestures and cards known as ‘valentines’.

Why Care about Type?

From the type of people we might have been attracted to this past Valentine’s Day to the way we look and behave, there’s a lot we inherit from our parents through genes, including our haemoglobin genotype.  This tells you the two genes (i.e. codes) – one inherited from each parent – that determine your type of blood haemoglobin.  Haemoglobin is the substance in your blood that gives blood its red colour and carries oxygen around your body.  The type of haemoglobin genes you inherit or pass on can play an important role in determining whether you or your children are affected by two serious inherited blood conditions – sickle cell disease and thalassaemia.

Sickle cell disease is a serious inherited blood condition that can cause severe pain, anaemia and organ damage.  It mainly affects people who originate from Africa, the Caribbean, Asia, the Middle East and the Mediterranean.  However, sickle cell is not a ‘Black’ disease and can affect ‘White’ people too, though less frequently.  The reason sickle cell is more common amongst the ethnicities described above is because the sickle cell gene was a mutation to protect against malaria and being a ‘carrier’ of one copy of the gene (also known as being ‘trait’) offered some protection.  People with the trait survived malaria and could have children with other survivors, thus making sickle cell prevalent in areas that had malaria.  Thus, it is not a condition people should feel stigma about.  Also, please remember trait or not, everyone should protect themselves when in malaria areas of the world!

Out of the 15 million people estimated to have sickle cell disease worldwide, around 10 million live in Africa of which approximately 4 million are in Nigeria.  In the UK, an estimated 15,000 people have sickle cell disease and in 2019/20,  262 new babies were born with sickle cell and 8247 were ‘carriers’ or ‘trait’ (Data from NHS Sickle Cell and Thalassaemia Screening Programme Data Report 2019/20).

Thalassaemia is a condition most common among people originating from India, Pakistan, Bangladesh, Cyprus and China.  People can inherit Beta Thalassaemia major which affects their ability to produce enough red blood cells. This causes severe anaemia and organ damage and they need to be on regular blood transfusions throughout life.

The usual and most common type of haemoglobin gene people inherit is Haemoglobin A. Unusual haemoglobin genes include Haemoglobin S (known as ‘sickle haemoglobin’), Haemoglobin C and beta thalassaemia.   People can only get sickle cell or thalassaemia if they inherit two unusual genes for haemoglobin, one from each parent.  In the UK 1 in 4 West Africans are sickle cell ‘trait’.

Post Valentine’s be the perfect partner!

On 14 February 2023, many people will have established new relationships or progressed further with old ones.  Particularly for young couples who have not yet had children, now might be the right time to raise awareness of these two inherited blood conditions so individuals can consider finding out their ‘haemoglobin genotype’, as each time two people with trait have a baby there is a 25% chance the baby could be born with sickle cell disease or thalassaemia.  A simple blood test will determine if you carry a gene for sickle cell or thalassaemia and tell you your haemoglobin genotype.  For someone with sickle cell anaemia this will be ‘SS’ and for someone with sickle cell trait this is ‘AS’.  However, if people inherit the other unusual haemoglobin genes they will have other types of sickle cell disease apart from sickle cell anaemia, such as ‘SC Disease’ (common amongst Ghanaians) and ‘sickle-beta thalassaemia’.

There is an NHS Sickle Cell and Thalassaema (antenatal and newborn) Screening Programme which offers all pregnant women a screening blood test which is then offered to the father-to-be if the woman is found to be a carrier. The Programme also screens newborn babies for sickle cell.  In England only 60% of men are currently accepting their invitation for sickle cell screening and so more men need to step up!  If the father-to-be also carries the sickle cell gene then the ‘at-risk’ couple is given all the information that enables them to make an informed choice about the pregnancy.  If you are already a couple and you know that you both carry one of the genes for sickle cell or thalassaemia  then you should present to your GP early in your pregnancy or contact maternity services or your nearest NHS Sickle Cell and Thalassaemia specialist counselling services directly. You should also tell healthcare professionals if you want counselling and prenatal diagnosis (tests to see if the unborn baby has the condition) and not assume that all healthcare professionals will know what you want!

Preconception Testing

Testing for your haemoglobin genotype before pregnancy is called ‘preconception testing’. You can ask your GP for this blood test before you and your partner decide to start a family and especially if you know other family members who are carriers or who have sickle cell. You and your ‘Valentine’ can then discuss any risks and the choices that are right for you!  Recent discussions the Sickle Cell Society has had with students and young adults who have not yet had children indicate that there is now more awareness of sickle cell and that many are keen to find out their genotype before starting relationships. They are also keen to know options available to ‘at-risk’ couples. The Sickle Cell Society and UK Thalassaemia Society do a lot of outreach to educate the general public about sickle cell and thalassaemia  as more awareness will also help to remove the stigma associated with these two conditions.   The Societies are also planning to do even more preconception outreach so those planning children will be well informed.

Now the valentine cards, chocolates and flowers are over why not learn more about sickle cell disease and thalassaemia so you can make informed choices (about testing) if and when the need arises?  By so doing, you just might be considered that perfect partner after all!

Below are websites with lots of information to help you:

Sickle Cell Society

www.sicklecellsociety.org

Email: info@sicklecellsociety.org

UK Thalassaemia Society

www.ukts.org

Email: office@ukts.org

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You can download the leaflet here: Read the Leaflet Here

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We have now been informed that preliminary findings from the ongoing worldwide clinical study called STAND (NCT038147460) indicates no statistically significant difference between Crizanlizumab 5mg/kg Crizanlizumab7.5mg/kg and placebo in making a difference to a sickle cell crisis. However, these findings are inconsistent with previous trial results from the SUSTAIN (NCT01895361) trial. As a result of this regulatory bodies such as the European Medicines Agency (EMA) will undertake a review of Crizanlizumab to evaluate the impact of these contrasting results on its currently authorised use.

We would like to reassure those who are taking Crizanlizumab , or who may be contemplating taking it, following discussions with their Health Care Professional, that it is safe. However, if you have any concerns, we recommend that you speak to your Consultant Haematologist in the first instance who will determine the best option for each patient depending on their individual situation.

We will provide more information when we have it.

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This was during my constant hospital admissions. I was no longer able to work or study which I’ve mentioned deeply affected me.

I felt too young to be disabled I didn’t want to be called it, I rejected that title, I guess in some ways my body accepted that title, my body deserved that title at the time. I just did not want to accept it because I felt embarrassed about it.

For a long time I’ve felt trapped by my body held back, held down, held hostage. My body was my plague not my protection it destroyed me, it destroyed itself.

Dealing with a physical condition is challenging to say the least. It made me have to use my mind because that was all I had that was the only part of me that was somewhat free, it was the only escape I had, I had to try and switch my mind off of my pain and bring my focus onto something else, which is extremely difficult and isn’t always achievable.

Learning to do my makeup was a huge distraction for me and the more I done it the more I grew a passion for it, I’ve never wanted to be a makeup artist though I just wanted to be able to do my own makeup.

Now when I’m in pain if it’s bearable I will do my makeup as it distracts me and cheers me up. I am in pain daily and I mean daily I’m not saying that figuratively I mean that literally, whether it’s sicklecell pain or fibromyalgia pain it’s daily, so having something that distracts me and brings me joy is so necessary, it’s apart of self care doing something just for you because it makes you happy and isn’t hurting anyone else and we need more of that.

My #sicklecellfamily I continue to pray for your health, happiness, hope and strength Alhumdulilah

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The podcast covers what sickle cell is, its history, symptoms, screening, cure, blood donation and more.

You can listen to the podcast via youtube.

https://www.youtube.com/watch?v=FWDFNm4wCe8

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https://www.youtube.com/watch?v=6r72E2VMoH0

If you would like to take part, please go to the  project website and complete the participation form.

https://www.kcl.ac.uk/research/pericles

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