It’s in the Blood!
As we celebrated World Sickle cell day in June, personally and frankly I did not see what I had to celebrate about it.
For me, I prefer to celebrate the New Childhood Stroke Guidelines which was launched on the 24th of May, something that will bring about tangible change in young peoples lives.
Sickle Cell and Young Stroke Survivors was started as a result of my experiences of childhood stroke so for me this is a big achievement for the charity.
I was happy to see Haemorrhagic stroke included this time, especially as my son has had both strokes.
Many thanks to the Stroke Association and the Royal College of Paediatrics and Child Health.
It was a labour intensive exercise which saw Clinicians and Allied healthcare professionals come from all over the country to form an in-depth study into the old guidelines to ensure that the new guidelines was comprehensive and that the experiences of Parent/Carers was key to ensuring moulding the
Parents like me contributed from the beginning to the end, it was a bittersweet experience as I had to relive everything but emotional support was great.
For many of us it has been exciting news, many do not realise the children as young as 2 to 16 years are at high risk of having a stroke (brain attack) just like adults. For many of them the first response is a Blood Exchange, to immediately reduce the sickled cells in the brain’s blood vessels which will reduce or clear the blockages causing the stroke.
From experience, this is a very scary experience and a journey one should not go alone.
Sometimes we take for granted that when we need blood that it will be there
Imagine a situation where it’s not there!
This is a stark reality for many children and young people living with sickle cell who may need it for monthly blood exchange or transfusion, to reduce painful episodes/crises or for operations.
Less than 2% of the UK’s black population donate blood, how can we change this?
Black people have a special kind of blood that is called Ro blood, this is only found in people of black ethnicity, so it is important that these children receive blood from their own but with such a poor percentage of black donors, one can see that our children have to rely heavily on the kindness of donors from other races.
I remember, June last year at a Blood donation centre in central London, I was waiting in a donation centre in central London to be taken upstairs for a NHS Blood & Transplant News Conference on Missing Types Campaign.
I was absolutely amazed at the number of people who were coming to donate blood during their lunch time, men in suits women were smartly dressed, I could tell they came from various offices around but they hopped onto the bed surrendered their arm to the Nurse and ate their sandwiches and had a drink as they donated their pint of blood.
Last year, my son took part in a blood campaign ran by NHS Blood and Transplant Remember when I asked what if there is no blood when you need it? So where is the Ro blood when they need it?
This week, one of my young service users story was published in the Guardian and other media, she called me crying, as she received a torrent of abuse, how insensitive can people be.
People need to step out of the dark ages and get educated!
Who makes people judge over others? Who gives people the moral high ground to criticise?
There is no one to support her because sickle cell is kept behind closed doors. When she sticks a needle in her sons stomach every night and has to take her son for blood transfusions who gives her support? It is mostly SCYSS because we ‘wear the shoe’too.
So people I am pleading for you to stop judging and hating us because you are not in our shoes
Let’s change our attitude and think about that young child hooked up on a bag of blood every month, are they getting the Ro blood they need?
Families need your support not your criticisms.
Ask, what can I do to support? How do I contribute positively?
Be the change!
Written by Carol Ossai
Founder & CEO
Sickle Cell and Young Stroke Survivors
Who has the Ro subtype?
As of January 2016, 2% of the regular blood donors in England have the Ro subtype.
The Ro subtype is more than 10 times as common in individuals from Black African or Black Caribbean ethnic backgrounds, than in individuals from White ethnic backgrounds.
It's vitally important that the people from whom we collect blood are representative of the population of the UK as a whole, and the need for Ro blood in the management of sickle cell disease is just one of the many reasons why we encourage more individuals from Black African and Black Caribbean ethnic backgrounds to start donating blood.