How blood donation helps sickle cell patients be there for their families

A Northamptonshire mum is raising awareness of the impact of sickle cell disease on families and underlining the incredible gift that blood donors routinely give to people with the condition.

Portia Wharton, 32, from Northampton, was first diagnosed with sickle cell when she was 18 months old and has lived with the disease ever since.

Mrs Wharton, who is married to Kieran and has a two-year-old son Kion, is working with the NHS to raise awareness during the national Sickle Cell Awareness Month of September.

She wants to emphasise the importance of blood donors to people who have the inherited blood disorder which creates unusually shaped red blood cells that can lead to health problems.

Portia, who works as a rota co-ordinator in the ophthalmology department of Northampton General Hospital, said: “People living with sickle cell are more than their condition. We have dreams, goals and hopes for the future.

“In the sickle cell community, we often call ourselves ‘warriors’ because of everything we go through and overcome every day. Every person living with sickle cell has a story worth hearing.” Sickle cell disease - NHS can lead to painful episodes called sickle cell crises, which can be very severe and last for days or weeks. People with the disease have an increased risk of serious infections and can suffer from anaemia (which can cause tiredness and shortness of breath).

Crises can lead to admissions to hospital and some people with the disease, like Portia, need regular blood transfusions if their symptoms get worse or there are signs of damage caused by the disease

Portia said: “I may look well today but I don't know what my day is going to be like tomorrow. It's always the ‘what if’. “

Portia was once challenged for parking in a disabled space, despite displaying a Blue Badge, because she didn’t look disabled.

She said: “People see me on a day when I look well, but they don't see the hospital admissions, the treatment, the fatigue, or the pain. Not all disabilities are visible.”

At Northampton General Hospital Portia has access to specialist teams who understand sickle cell, know her care plan and can begin treatment quickly. The hospital’s dedicated Oncology and Haematology Assessment Unit provides patients with direct access to specialist care when they become unwell at home.

Matron for Oncology and Haematology, Sarah Coughlan, said: “Patients can contact the unit and are triaged by an experienced nurse who understands their condition and clinical needs.

“They can then attend the unit to be reviewed by teams who are familiar with their individualised care plans and can initiate appropriate treatment quickly, avoiding unnecessary delays and ensuring timely escalation.”

Portia added: “There are familiar faces for me at NGH and this is really important. They know my care. I know I'm going to be looked after. When you're in that much pain, being listened to and getting the right treatment quickly makes such a difference.”

In addition NGH’s haemoglobinopathy clinical nurse specialists work closely with hospital units, wards, and the emergency department, to provide hospital staff with training on how to care for patients with sickle cell and help enhance the understanding of it.

Why blood donation is so important

Blood donation is hugely important for sickle cell disease patients.

Portia receives red cell exchange treatments using donated blood to help her manage her condition and reduce the risk of serious complications.

She said: “I always look on the blood bags to see where the blood had come from.

“I used to think somebody in Manchester has donated this blood and now I'm receiving it. That person doesn't realise the gift they've given me. They've given my little boy a healthy mummy and they've given my husband his wife.

“I'm eternally grateful to my blood donors because they've given me another chance to be healthy and spend time with my family.”

Portia hopes her story will encourage more people to donate blood and help ensure that people living with sickle cell can continue receiving the transfusions and treatments they depend on.

Increasing the number of blood donors from Black heritage communities is particularly important, as many people living with sickle cell need closely matched blood for the best possible treatment outcomes.

How you can help

Why not become a blood donor and help to save lives and improve people’s quality of life and act on your intention during Sickle Cell Awareness Month. To find out more or book an appointment, visit: https://my.blood.co.uk/.

All donations help but people of Black heritage are particularly encouraged to donate, as many people living with sickle cell need closely matched blood to receive the best possible care.