Living and working with sickle cell disease
Annabel Ashalley-Anthony is an administrator in the education centre at Hammersmith Hospital. She also has sickle cell disease (SCD) herself and is receiving treatment from the haematology team on the same site. While sickle cell disease can affect anyone, it predominantly affects people from African and Caribbean backgrounds. To help mark Black History Month, Annabel explains the impact of sickle cell on her life and the Trust initiatives supporting people with sickle cell like her.
My parents have sickle cell trait (SCT), as do two of my siblings, which means they have one sickle cell gene and one normal gene, but may not have symptoms of sickle cell. If both parents have sickle cell trait, there’s a 50 per cent chance of having a child with the trait, and a 25 per cent chance of having a child with full blown sickle cell disease. I’ve lived with sickle cell disease my whole life.
A normal red blood cell is a soft round doughnut shape, but the blood cells of someone with sickle cell disease are hard and crescent — ‘sickle’ — shaped. This means it can be difficult for the cells to pass through small blood vessels, blocking blood flow and oxygen to organs within the body. When this happens, the sufferer is said to be in ‘crisis’. A crisis can be triggered by a variety of things: cold weather, stress, diet, another illness or over exertion.
Living with sickle cell disease
During a crisis, the pain is so intense I’m unable to speak but I’m lucky to have my sister who knows me well and communicates for me. My body is never completely free from pain and I’m exhausted most of the time, but you get used to it.
SCD is difficult for people to initially understand because I look well. It is an ‘invisible disease’ and I can’t count the number of times I’ve had to prove I was sick. The only outward sign of my illness is my jaundiced eyes, which can vary from pale to very dark yellow in colour. Each day, I drink an average of four litres of alkaline water, which I believe helps keep the colour as neutral as possible. I also meditate regularly which is crucial to controlling my pain.
Having sickle cell isolates you and it’s difficult to make friends because you are always in and out of hospital. Your immune system is compromised because of the disease and even when you are doing everything right, the body can still go into crisis. The condition affects my whole life, including my working life and I’ve had to reduce my full-time hours to work part-time.
Another effect of having SCD is the stigmatisation. There are people who think it is contagious and I’ve had a mother shield her child from me. At age 11, I was accused by a concerned teacher at school of having a drinking problem – the teacher assumed my jaundiced eyes were a sign of alcoholism. People – including some health professionals – have asked me how long I’ve had sickle cell: they don’t realise it is an inherited condition.
Trust support for people with sickle cell
The Trust’s sickle cell forum, a patient-led forum facilitated by a specialist nurse, has been an excellent network for me. It was there that I met a patient who told me he believed drinking alkaline water had kept him out of hospital for four years, so I decided to try it. I think it has helped me – since I’ve been drinking this water I haven’t been admitted to hospital for sickle-cell related illness for two years.
Through the forum, we’re working with the Trust’s haematology team to try to change the standard protocol (treatment process) for people with SCD. Each person’s body responds differently to different methods, so we want to see the standard protocol become more flexible. At the beginning of a crisis the pain is so severe sufferers are given high doses of morphine; this is eventually reduced to an equal mix of heavy oral pain killers and fluids. The fluid is then phased out while the medication continues, but I find that phasing out the medication and continuing with fluids works better for me. We want to introduce individual protocols so any doctor who gets your notes will know your treatment preferences and won’t default to the standard protocol.
Holistic support for sickle cell
Another form of Trust support is a sickle cell therapist who patients see according to need. I used to see him once a week on average, but this can be more often if required. This is essential support as people with SCD have to deal with psychological, physical and emotional issues: a small percentage become addicted to morphine because of its frequent use; your body becomes resistant to the pain medication and over time the dosage increases. Recently, poor mental health has been linked to SCD, which is not surprising. Dealing with any chronic illness has a significant impact on your mental state especially from an early age.
Improving understanding of the disease
I’ve written a short story called ‘A Conversation with Death’ , about a young girl with sickle cell disease who is seeking euthanasia due to the complications that come from her disease. The story won the Henshaw short story competition, raising more awareness of the disease, which is really important to me. I’ve recently just finished writing a children’s book called The Sickle-Cell Warrior which depicts a young boy triumphing against his disease. It is important for people especially those who have sickle-cell to know that despite having a debilitating condition they are still strong. The Sickle Cell Society has also been very supportive and offers a space for people with the disease, especially younger people, to come together and share their experiences.
There is a lack of knowledge about the condition and I’ve created a booklet explaining the disorder in simple terms to make people more aware. I hand out the literature on Sickle Cell Awareness day in June every year with a bake sale to raise funds. There is also now a Sickle Cell Awareness month in September. I donate the money raised to the Blood Fund at Hammersmith Hospital, which supports the hospital’s haematology service. Sickle cell research is underfunded compared to other blood disorders, so I’d like to see more investment in this disease and hopefully, finding a cure.
The Trust’s sickle cell patient group meets is open to patients of the Trust’s sickle cell service. While haematology consultants, nurse specialists and other health professionals often attend, the group is patient led. It also has links with other local groups for people living with sickle cell. Learn more about haematology services at the Trust.