Stories

• 1. Adebisi Aluko
• 2. Anne Welsh
• 3. Hannah Hunt
• 4. Peter Smith
• 5. Danielle Brown
• 6. Aggie Michael
• 7. Diane Crawford
• 8. Hellen Adom
• 9. Sonoo Malkani
• 10. Kalpna Patel
• 11. Vanessa White Smith
• 12. Sheree Hall
• 13. Ayodele Ayoola
• 14. Tina Sharma
• 15. Raj Singh
• 16. Rose Moulton

1. Adebisi Aluko

Has sickle cell disease

Ade is in his early thirties and is a film studies undergraduate.  In his spare time Ade loves to entertain people and enjoys making music, writing songs and putting smiles on his audience’s faces.  Ade has sickle cell disease and talks about how he still leads a full life and wants to spread awareness about the condition. He stresses that it is important for men to get screened and for couples to talk about their choices before they start a family. 

2. Anne Welsh

Has sickle cell disease and the mother of a carrier

Anne is a successful investment banker. She runs a consultancy business and is the Chair of the Sickle Cell Society. Anne lives with her husband and young son Conner. Anne has sickle cell disease and talks about how she juggles her busy life whilst living with the condition. Because Anne has sickle cell she knew that it was important that her husband got screened before they decided to have a family. Even though her husband is not a carrier, her son did inherit being a carrier. Now she is bringing him up to understand what this will mean for him in terms of planning his own family. It is important to know that anyone can carry the sickle cell gene - it is more rare amongst Caucasian people but still possible. This is one of the reasons why we offer universal screening.

3. Hannah Hunt

Sickle cell carrier (trait)

Hannah comes from a family of five girls. Three of them are sickle cell carriers (also known as having sickle cell trait). When she was pregnant with her first child both Hannah and the baby's father opted for antenatal screening. Now she has three children of her own she is keen for them to also learn more about sickle cell. She also talks about the support and information available from the voluntary sector and screening programme.

4. Peter Smith

Sickle cell carrier (trait)

Peter is a sickle cell carrier. He talks about the importance of knowing your carrier status, discussing this openly with your partner and understanding the choices you can make. He talks honestly about difficult choices he has made - weighing up whether a relationship was strong enough to face the risk of bringing up a child with sickle cell disease.

5. Danielle Brown

Has sickle cell disease 

Danielle has sickle cell disease. She is an A level student who lives at home with a very supportive family. The family are very keen on more awareness of sickle cell disease and believe that it is important for schools, the workplace and industries such as airlines to understand how sickle cell affects people.

6. Aggie Michael

Thalassaemia carrier with a child with beta thalassaemia major 

Aggie describes the upsetting process of finding out that her daughter has thalassaemia major. Today in England, the NHS is trying to make sure that people get screened early in pregnancy so they have time to understand the issues and weigh up their options. At that time, Aggie didn't know much about thalassaemia, did not understand the risks and received screening late in pregnancy. She talks about the importance of people knowing the choices early and being able to find out about having a child with thalassaemia and the support available.

7. Diane Crawford

Has sickle cell disease - her daughter is a carrier (trait)

Diane has sickle cell disease and lives with her daughter Chi who is a carrier. Diane talks about managing her condition with the help of Chi and with support from her local counsellor. She is pleased that nurses are beginning to understand the condition better and that care is gradually improving. She stresses the importance of screening for everybody - especially as there are more mixed marriages today in England and you cannot tell who is at risk from their skin colour.

8. Hellen Adom

Has sickle cell disease and has two children with sickle cell disease and another who is a carrier (trait) 

Hellen and her family speak frankly about the challenges of living with three members of the family who have sickle cell disease. Although they manage a lot of pain and hospital visits, they are pleased that health care professionals are becoming more knowledgeable. They used to be in hospital for several days when they had a crisis but today it can often be managed in hours or overnight. Hellen talks about how the life expectancy of people with sickle cell has improved dramatically. She herself is an inspiring example - managing a family of three children and also working actively to raise awareness of the condition. Hellen has helped the screening programme in many ways including advising on the development of policy and practice and also in showing the drama - The Family Legacy in barbers' shops.

9. Sonoo Malkani

Thalassaemia carrier and has a son with beta thalassaemia major

Sonoo describes the harrowing process of finding out her son had thalassaemia in the days before the NHS screening programme was set up. She had never heard of thalassaemia but then discovered it ran in her family but was kept as a secret. Sonoo believes passionately that this is an issue that should be owned by the community so that young people starting a family can make informed choices. She has campaigned tirelessly on this issue. She has won awards for her work as a volunteer including both in thalassaemia and working as a volunteer for a police and consultant group.

10. Kalpna Patel

Has sickle cell beta thalassaemia 

Kalpna believes so strongly in the importance of raising awareness and improving life for people with sickle cell disease that she works as the Fundraising Manager for the Sickle Cell Society. She talks about the importance of understanding the condition and knowing how to manage it. Doing this enables her to have an active and rewarding professional and social life. She knows how important it is to talk to a prospective partner about screening before starting a family.

11. Vanessa White Smith

Sickle cell carrier (trait)

Vanessa found out she was a carrier when she was offered a blood test as part of her routine antenatal care in pregnancy. This also led to a wider discussion in her family about who else might be a carrier. She talks about how important it is for young people planning a family to get screened and, if they are at risk of having a child with sickle cell to find out about living with sickle cell and the help and support available.

12. Sheree Hall

Sickle cell carrier and mother of a boy with sickle cell disease and a girl who is a carrier (trait)

Sheree talks movingly about finding out she was a carrier when she was pregnant with her first child. No-one in her family knew about sickle cell or was aware that they might be a carrier. With her second child she opted for a test for the baby (prenatal diagnosis - PND). This showed that he had inherited sickle cell disease. Having found out about sickle cell she decided to go ahead with the pregnancy. She has been on a fast learning curve about the disease but today campaigns to spread awareness of the condition and about screening. She says - all teenagers, black and white should think about it. Sheree is also a regular blood donor and wants people to know that carriers can donate blood.

13. Ayodele Ayoola

Has sickle cell disease 

Ayodele has sickle cell disease. She has plans to become a sociology teacher. She lives at home with her mother (who also has sickle cell disease) father and her siblings. Ayodele thinks it is important to have a screening test for sickle cell disease so that parents are educated about sickle cell disease.
Adelle talks about managing her condition - for example she loves swimming but knows she can't stay in too long. She thinks knowing about the condition and taking steps to look after yourself have made a big difference. In her cousin's family, no-one knew much about it and therefore her cousin has struggled with many more hospital visits.

14. Tina Sharma

Has beta thalassaemia major 

Tina Sharma is a busy secondary school teacher who is working full time, as well as studying part time for her Masters degree in Art Design and Craft Education. Tina has beta thalassaemia and talks powerfully about the importance of understanding inheritance within families. Her mother suffered distress because her husband's family blamed her for bringing disease into the family. They did not understand that a child inherits the condition from both the mother and the father. Today, on both her mother and her father's side of the family there is greater understanding and acceptance of the importance of screening. Tina knows of at least 10 cousins who have been found to be carriers.

15. Raj Singh

Has beta thalassaemia major

Raj talks encouragingly about how healthcare professionals understand more about thalassaemia and how care is improving. Today people are living to have children and even grandchildren. Raj takes care of himself - having blood transfusions every three weeks and taking medication - but he tries to live a normal life and not be restricted. His sister talks about the importance of getting screened and mentions this in connection with arranged marriages - she feels this is important. 

16. Rose Moulton

Mother of two children who are carriers

Rose talks about how her two children have different attitudes to being carriers and about how open they are about this. She describes some of the myths and misconceptions that the family have experienced.