More than 2,000 new plasma donors needed in London to treat rare diseases, says NHS
Tap above for video report by Helen Keenan
The NHS needs around 2,400 people from London to register as plasma donors to help treat more than 50 rare diseases. NHS Blood and Transplant is making the appeal ahead of World Rare Disease Day on February 28 because so few people have heard of plasma donation.
Only around two in ten people know about it. Plasma is made into a medicine called immunoglobulin which is used to treat immune system disorders and around 3,900 people from London receive it each year. There are currently 2,160 donors at the city's donor centre in London Road in Twickenham but another 2,400 are needed to collect the target level to improve future supplies.
Clara Cameron, 22, an executive assistant, of Hammersmith said immunoglobulin saved her life as a child - and is again helping her as an adult now her illness returned. As a child, Clara was having up to 54 epileptic seizures a day. When she was 12 and her illness was at its worst, she was treated in hospital for five months.
Her seizures lasted 2-3 minutes and caused choking and full body spasms - unusually whilst remaining conscious. A paralysis called 'Tod's Paresis' also set in affecting different parts of her body at different times. The most serious of which was when the throat was affected, meaning Clara lost her gag reflex and had to be intubated. Many standard anti-epileptic medications were tried with no effect. A scan found her whole brain was swollen. Doctors decided to try immunoglobulin, a specialist blood product made from donated plasma. It is used to save lives for many illnesses though not normally epilepsy.
Doctors still don't know exactly how it works for some patients. Fewer than five children a year receive it for epilepsy. Clara said: "There was a dramatic drop in the seizures. They went from up to 54 a day, to 20 a day, to 9 a day, to none, over about two weeks.
"I didn't really believe it was actually possible that it was working. I had been in hospital for five months by that point. I was a 12-year-old and I just wanted the illness to end. It was 100% like a miracle."
Clara had immunoglobulin once a month, then less frequently as the months and years went on. She did not have seizures through the rest of her childhood. However the seizures restarted in September 2021, occurring every few weeks. Clara, who now lives in London and is under the care of UCLH, again received started receiving immunoglobulin and her last seizure was in mid-January. Clara said: "I am so grateful to people who donated plasma. For me, immunoglobulin was and is a miracle treatment. It turned my life around. I didn't think I would make it to 13 let alone 22. "And now that my last seizure was a month ago, we are very much hoping it's helping me again!"
What is plasma?
Plasma is part of your blood. It's the liquid which carries everything around the body. When donated, it is a yellow colour.
Plasma contains antibodies, which are made into the immunoglobulin medicine. The antibodies strengthen or stabilise the patient's immune system. During donation, a machine gradually separates out up to 700mls of plasma from blood.
Donation takes about 35 minutes and the whole visit - including questionnaires and snacks - takes around one hour 15 minutes.
England relied on imported immunoglobulin for more than 20 years as a precaution against vCJD but the Medicines and Healthcare products Regulatory Agency (MHRA) said in 2021 that plasma from UK donors can again be used for immunoglobulin. Donations taken in Twickenham will bolster availability of the medicine in England, giving patients more protection from international shortages. Pamela Antoinette, Plasma Operations Manager for Twickenham Donor Centre, said: "Plasma saves the lives of people who have a weak immune systems or people with immune systems that are attacking their own body.
"The plasma is concentrated into a medicine call immunoglobulin which is used to treat dozens of rare diseases.
"For example, you could help a baby with an inflamed heart, a mum who is losing the ability to walk, or a boy who could die of complications from the common cold.
"However we need more donors in London at our Twickenham centre, to build up long term supplies of this lifesaving medicine - please register to donate." If you or someone you know wants to donate plasma, visit www.blood.co.uk/plasma or search 'donate plasma'.
Want a quick and expert briefing on the biggest news stories? Listen to our latest podcasts to find out What You Need To Know