NHS Blood and Transplant marked Rare Disease Day - Monday, February 28th - with an appeal for people to donate at Birmingham plasma donor centre.
Many of the rare diseases highlighted by the campaign are treated with a medicine made from plasma donations called immunoglobulin. However only around 20% of appointments at Birmingham plasma donor centre in New Street are being filled each day.
NHS Blood and Transplants needs more people to start donating plasma, to build stocks. The antibodies in these medicines can protect people from infection or they can stabilise the immune system if it’s attacking the patient’s own body.
Margaret Bennett, 69, from Harborne in Birmingham, is supporting the appeal after receiving plasma medicine for more than 20 years. The retired teacher was diagnosed with a rare Primary Immunodeficiency in 2003 - her body can’t make enough antibodies to fight infections.
“My GP said it was like nothing he had ever seen before,” she said.“He was actually very apologetic afterwards because he said he had never come across anything like this before and he felt awful that I had suffered from it for decades.”
Margaret has home infusions of immunoglobulin every week. “It has made a huge difference to my quality of life because I used get repeated infections which could have led to pneumonia which can be life-threatening.”
Margaret, who is married with two adult daughters, said donors are ‘amazing’ because they will be helping to save lives. She added: “The problem is that not enough people know about plasma donation. It’s not something which is really out there in the public consciousness yet.”
Rare Disease Day is an annual event organised by EURORDIS, an alliance of nearly 1,000 patient groups across Europe. In the last recorded year, 1269 people from the West Midlands region received medicines made from plasma last year for a range of rare diseases, including more than 500 at Birmingham’s hospitals.
Plasma donation to the NHS has only just restarted after more than 20 years. The plasma is being stored, ready to be made into a medicine called immunoglobulin when a full manufacturing and supply chain is in place.
Margaret said: “The country relied on imported plasma medicine for more than 20 years and it’s much better to think we can develop a supply system here.” Examples of rare diseases that may need plasma medicine treatment include:
· Primary Immunodeficiencies. These are mainly genetic disorders where the
person can’t make enough antibodies to fight infections. The antibodies in the medicine boost their immune system.
· Autoimmune disorders such as myasthenia gravis. The body’s immune system mistakenly attacks the communication system between the nerves and muscles. The antibodies in the medicine stabilise the patient’s immune system.
· Neonatal alloimmune thrombocytopenia. Antibodies from the mother cross the umbilical cord and attack her baby’s platelets, increasing the risk of severe bleeding.
Lee Wright, NHSBT’s Plasma Donor Centres Area Manager, said: “Many people have never heard of plasma donation or immunoglobulin medicine, but for the people who need it, it’s a lifesaver, and in many cases no other treatment is available. We’re so pleased to be collecting plasma again after more than 20 years however donation levels are low because few people have heard of it.
Please register to donate if you can. Your plasma will be made into immunoglobulin medicine, helping to save the lives of people with rare and potentially fatal diseases. You have a medicine in you.”
Plasma from UK donors could not be used for immunoglobulin medicines between 1998 and 2021, one of the precautions put in place against variant Creutzfeldt-Jakob disease. The restriction was lifted by the Government in 2021, based on independent advice from the Medicines and Healthcare products Regulatory Agency (MHRA).
Because of the ban, the UK has relied solely on imported immunoglobulin. Now plasma donations for immunoglobulin are again being taken in England, and the stored plasma will be made into medicine when a full UK supply and manufacturing chain is in place.
Plasma can be donated at one of three dedicated plasma centres, Birmingham, Reading and Twickenham. A machine gradually filters a donation out of your blood. Plasma can also be recovered from blood donations.
· to donate plasma in Birmingham, call 0300 123 23 23 or visit
