For 30 years, Leanne Preedy has relied on antibodies contained in blood generously donated by strangers to keep her alive.
Diagnosed at the age of four with an immune system disorder, Leanne needs regular antibody injections every few weeks to prevent her from picking up infections which could make her severely ill or worse.
Leanne, 34, has Common Variable Immunodeficiency (CVID) — those affected either lack or have low levels of immunoglobulin G, the most common type of antibody in our blood, which plays a key role in fighting off infections.
Untreated, the condition means she is prone to infections and even a trivial cold can leave her severely ill — or lead to pneumonia (inflammation of the lungs), repeated bouts of which can cause lifethreatening lung disease.
As a child, Leanne remembers being ‘in and out of hospital more times than my mum, Lorraine, wants to remember, often on oxygen or yet another course of antibiotics’.
Leanne (pictured with children Ravella and Hudson), 34, has Common Variable Immunodeficiency (CVID) — those affected either lack or have low levels of immunoglobulin G, the most common type of antibody in our blood, which plays a key role in fighting off infections
There is no cure for CVID, but the condition can be managed by regular infusions of medicine containing immunoglobulin to boost antibody levels — which is made by processing donations of blood plasma from members of the public.
In fact, Leanne, a photographer from Ongar, Essex, is one of around 17,000 people in England who receive lifesaving immunoglobulin medicine every year.
Around half of those need it after treatments such as chemotherapy for cancer or anti-rejection medication following an organ transplant which, while vital in themselves, both reduce antibody levels, leaving patients vulnerable to infections that could then prove fatal.
Intravenous immunoglobulin is also used as a treatment for conditions where the immune system mistakenly attacks the body’s own tissues — such as GuillainBarre syndrome, where it attacks the nervous system.
Here, it’s thought healthy donated antibodies prevent the harmful ones from continuing the attack on the nerves.
But the supply of this life-saving product has been in short supply — so short that in August 2021, the NHS admitted that some patients had to be given smaller doses of immunoglobulin or had to wait longer between infusions; fortunately no lives were directly put at risk.
There is no cure for CVID, but the condition can be managed by regular infusions of medicine containing immunoglobulin to boost antibody levels (file photo)
However, such shortages should soon be a thing of the past, after a recent ruling allowed the UK to make its own immunoglobulin for the first time in 20 years.
Currently, 70 per cent of the immunoglobulin given to patients in infusions is made by firms in the U.S., which extract it from plasma — the liquid part of blood that contains infection-fighting antibodies — from donated blood or donations of plasma alone.
For this, blood is taken from the donor’s arm and spun in a centrifuge to separate the plasma from red and white blood cells.
The red blood cells are then returned, and the process repeated until 700ml of plasma has been obtained.
The donor’s body will replenish the plasma in around 48 hours.
The plasma is frozen and stored and the immunoglobulin is separated out (by adding salt and ethanol during a process that takes about six months), but recent problems have highlighted how fragile the supply of this lifesaving product is.
During the pandemic there was a 20 per cent drop in U.S. plasma donations and the price of immunoglobulin products rocketed, which had a further impact on global supplies.
In the UK, we have been reliant on imported plasma to make immunoglobulin since 1999, when the government banned the use of plasma from UK donors to stop the spread of Creutzfeldt-Jakob disease (vCJD), a human variant of bovine spongiform encephalopathy (BSE), so-called mad cow disease, a fatal neurological condition that causes irreversible brain damage.
‘As a vCJD precaution, the NHS has had to import immuno- globulin for more than 20 years, but international demand is so high there can be pressure on supplies,’ says Dr Naim Akhtar, a consultant in donor medicine at NHS Blood and Transplant (NHSBT).
The ban was overturned in 2021 — after the Medicine and Healthcare products Regulatory Agency (MHRA) decided UK plasma was as safe as that from overseas — and now final plans are being put in place to start the UK’s own immunoglobulin production.
Plasma is being donated in this country and stored in readiness for production — the NHSBT says it has around 5,000 plasma donors so far, but hopes to double this number. It’s hoped that our production of immunoglobulin will start next year and will produce 20 per cent of England’s needs, benefiting around 5,600 patients who need regular immunoglobulin infusions.
It’s an important step forward because, while supplies of immunoglobulin have dwindled, demand for products tripled between 2004 and 2018, partly driven by better diagnosis of conditions that need it, and increased use of cancer therapies.
‘The needs of new therapies using immunoglobulin are increasing all the time,’ says Dr Sinisa Savic, an associate professor of immunology and allergies at Leeds Teaching Hospital NHS Trust.
‘For example, some cancers are now treated using CAR T-cell therapy [an immunotherapy treatment where T-cells, which develop from stems cells in bone marrow, are altered before being returned to the patient’s body], which is proving successful in curing some cancers but the patient is left with a weakened immune system.
‘They are left lacking antibodies which need replacing with infusions of immunoglobulin.’
Both Leanne and her children, Ravella, seven, and Hudson, four, are likely to be among those receiving immunoglobulin made from UK-donated plasma.
When Leanne married Chris, 52, who works in property management, they were told it was unlikely CVID would be passed on to any future children, but when Ravella was a baby she spent two weeks in hospital with swine flu.
‘She had various tests and aged one was diagnosed with CVID like me,’ says Leanne. ‘It was heartbreaking knowing she had it, too.
‘Although I have never let my low immunity define me and have led a normal life, I still felt a mother’s guilt about that.’
Hudson was also diagnosed with CVID, at two weeks old.
For the children and Leanne, their regular immunoglobulin infusions are literally a lifeline.
Leanne was a youngster herself when she started having intravenous immunoglobulin injections into her arm every three weeks in hospital. To minimise her absences from secondary school, a nurse came to the family home every week to administer injections into her thighs.
But when Leanne began to experience recurrent chest infections in her 20s, she resumed intravenous injections in hospital, which allowed her to have a bigger dose. These days, Leanne receives her immunoglobulin every three weeks in a 90-minute procedure using an automatic pump at home.
A nurse inserts the cannula into her arm, but Leanne operates the pump, which is on a stand she can carry around with her. ‘Often before I’m due my next infusion, I feel fatigued and I sense my body needs another,’ she says.
‘Afterwards I feel energised and have lots of get-up-and-go to get things done. I do have peaks and troughs with tiredness, but most of the time the infusions do keep me well.’
Infusions are now a normal part of life for her children, too.
‘On a Sunday morning every fortnight, my children sit on the sofa watching a movie as the immunoglobulin goes into the tops of their legs using an automatic pump,’ says Leanne.
Despite this, since starting pre-school Hudson in particular has picked up colds and tonsillitis, and by Christmas 2022 he had already needed hospital treatment twice as a result.
‘On other occasions he has had to go to hospital for oxygen or antibiotics because of breathing issues,’ says Leanne.
‘He picks up all the bugs all kids get when they start mixing, but he can become a lot more ill because of his poor immune system, which is a big worry.
‘It’s the immunoglobulin that keeps me, my children and thousands of other people alive.
‘Restarting plasma collection here once again can only be a good thing for all of us.’
Dynamic duos – nutrients that work best when consumed together
THIS WEEK: Phenols and fibre
A recent study by the Antioxidants Research Laboratory at the U.S. Department of Agriculture showed that drinking orange juice while eating a bowl of porridge can clean your arteries and prevent heart attacks with twice as much efficacy than if you were to have either breakfast staple on its own.
The reason? Compounds in oats and orange juice, called phenols, help to stabilise LDL or ‘bad’ cholesterol when consumed together.
‘I’d recommend replacing the juice with a handful ofblueberries,’ says dietitian Orli Rhodes.
‘Like orange juice, blueberries are high in vitamin C and phenols too — they’ll add natural sweetness to porridge, but the fibre in the whole fruit means they don’t create blood sugar spikes like juice does.’
WHAT TO TRY: ‘Add chia seeds to porridge and blueberries — they are high in omega-3 fatty acids [that help reduce fats in your blood] — which will give you the perfect, heart-friendly breakfast,’ says Orli Rhodes.
