CIANNA'S SMILE SICKLE CELL AWARENESS BALL
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In 2016 and 2018 we held our first Sickle Cell Awareness masquerade ball and it was a huge success. Both events were sold and each raised over £2000 on the night.
Following such a wonderful outcome we have decided to hold another ball this year at the fabulous Hilton Reading hotel on Saturday the 5th October 2019. Tickets are available directly from ourselves or through the Eventbrite page.
Each ticket includes a glass of bubbly on arrival, 3 course meal, live entertainment and disco. There will be a great range of raffle prizes and a silent auction too. To help raise monies on the night to aid us in supporting families affected by Sickle Cell living in the Thames Valley area, raising awareness of Sickle Cell and reducing isolation for those living with Sickle Cell.
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At the age of 4 Cianna was admitted to hospital with her first Sickle Cell crisis.
Cianna attended her first day of school and was so excited to share such a huge milestone with her friends. To celebrate this milestone we attended a barbecue at a friends house. After returning home and getting into bed Cianna began screaming and shortly after was vomiting. We were confused as she had been fine all day but it was obvious that something was seriously wrong. After a few moments of contemplating what we should do we rushed her to the Accident and Emergency department at our local hospital.
On arrival we explained that Cianna had been fine all day but all of a sudden presented worrying symptoms. The nurses gave her pain relief and shortly after we were seen by a doctor. The doctor explained that the pain was due to constipation and that Cianna could go home. After expressing doubt in the doctors diagnosis of the symptoms being due to constipation we were reassured it was nothing worry about and were sent home.
We arrived home and within a couple of hours Cianna began screaming again. The pain relief had worn off and without a second thought we were getting dressed and leaving to go back to A&E. We were seen by the same team and when the doctor arrived she reluctantly agreed to do a chest x-ray. The results came back reveling Cianna had Pneumonia and was having a Sickle Cell Crisis. In some cases these can be life threatening. We were devastated. We could not help but think about what could have happened if we had not returned to the hospital.
The lack of empathy shown towards those with Sickle Cell became apparent: the constant battle to prove the severity of the condition and the level of excruciating pain it causes is met with doubt. It was shortly after this ordeal that we decided to start the Cianna's Smile organisation to help others with Sickle Cell and make a positive impact within our community.
URGENT NEED FOR MORE BLOOD DONORS
In June 2018 the review into blood, stem cell and organ donation within Black, Asian, Mixed Race and Minority Ethnic (BAME) communities has been overseen by a panel of Labour MPs including Sharon Hodgson MP, Shadow Health Minister and Mark Tami MP, Chair of the All-Party Parliamentary Group on Stem Cell Transplantation. It was chaired by Eleanor Smith MP.
The problem of insufficient blood, stem cell and organ donation is fundamentally one of supply and demand. BAME people are disproportionately affected by this as they are subject to a higher demand and shorter supply than other groups. The high demand is partly related to BAME groups being particularly vulnerable to illnesses that lead to organ failure. Meanwhile with regard to stem cell donation, the relatively short supply relates to the diverse genetic heritage that BAME individuals are likely to have. These factors (although different for the different types of donation) make it harder to find a BAME patient and donor who are genetically similar than for a White Northern European. The incremental development of this situation and lack of a specific perpetrator has led to it being called a ‘silent crisis'.
Fewer than 5% of donors who gave blood in the last year were from BAME communities, although the BAME group makes up around 14% of the total UK population. Currently, only 1% of people who give blood in England are Black.
• The most common blood diseases that affect BAME communities are thalassaemia (primarily the South Asian/Mediterranean communities) and sickle cell disease (primarily the Black community).
• Approximately 1,000 people in UK have thalassaemia.
• Between 13,000 and 15,000 people in the UK have sickle cell disease.
• NHS Blood and Transplant (NHSBT) has reported that at least 250,000 new blood donors overall need to be found in 2018/1919.
• Due to changes in medical guidelines to treat patients with sickle cell disease, 10,000 new Black African Caribbean donors with the Ro blood subtype and 17,000 new donors with the O-negative blood type (the universal blood used in emergencies when the Ro subtype is not available) need to be found in 2018/19
Deceased organ donation
Organ donation from these individuals happens when they have been pronounced dead, either from circulatory death (DCD) or brain death (DBD), and when the consent of their next of kin has been given.
• In 2016/17, the NHS organ donor register contained about 23.6 million opt-in donors.
• In the UK, of the 1,413 people who donated their organs after they died, 29 were Asian, 22 were Black and 14 were Mixed Race.
• In 2016/17, 457 people died waiting for a donor. 85 of these were BAME.
Living organ donation
These donors elect to give an organ while they are still alive.
• In 2016/17, 42% (1,043) of the UK’s organ donors were living donors.
• Of all UK living kidney and liver donors in this year, 79 were Asian, 17 were Black, 5 were Mixed Race. • NHSBT reports say that over a third of those on the waiting list for a kidney are from BAME communities, while BAME people wait on average a year longer for a kidney transplant than their White counterparts.
Stem Cell Donation
• Only 61% of BAME patients in need of a stem cell transplant find a suitably matched donor, compared to 96% of White Northern European patients.
• BAME donors make up 15% of the stem cell register. Black donors make up 1.2% of potential donors on the British Bone Marrow Registry.
• The chance of a BAME patient finding the best possible match is 20%, whereas the chance of a White Northern European patient finding the best possible match is 69%.
Information correct on 28/06/18
NCS THE CHALLENGE
The National Citizen Service(NCS) offers fantastic opportunities of a once-in-a-lifetime experience for 15-17 year olds.
The NCS its young volunteers build skills for work and life whilst taking on new challenges and meeting new friends.
We have been lucky enough to be chosen by the NCS as a community partner for the third year running. With the volunteer groups raising awareness of Sickle Cell and fundraising for our cause, we have seen a positive impact in our community interaction.