About the Pernicious Anaemia Society
Who Are We?
We are an International Charity (charity reg. no. 1147839) that is based in Bridgend, South Wales. The society was founded in 2005 by the current Executive Chairman, Martyn Hooper. The original aim of the society was simply to provide an easy to understand explanation of Pernicious Anaemia to newly diagnosed patients – at the time there was no such information available. It quickly became obvious that there were serious issues with the way in which B12 Deficiency in general, and Pernicious Anaemia in particular, is diagnosed and treated. The society was entered onto the U.K’s Charity Commission in July 2006.
The society is run entirely by volunteers. The Trustees of the society meet every three months. Overall responsibility for the society rests with eight trustees from various parts of the U.K.. Day-to-day decisions are made by the Executive Chairman.
In March 2009 a membership fee was introduced as part of a sustainable funding strategy. We now have more than six thousand members including one hundred and ninety members who joined by completing a paper membership form and who do not have access to the internet. Our youngest member is just eighteen months and our oldest is aged ninety nine.
What We Do
The original objects of the society still remain the core of our activity – namely providing information help and support not only to sufferers of Pernicious Anaemia but also their families and friends.
- We provide Information Leaflets that explain in plain English what Pernicious Anaemia is and outlines some of the likely problems and consequences that the newly diagnosed patient can expect to encounter
- We provide a ‘call back’ Helpline
- We organise local support groups that help alleviate the isolation often experienced by patients with Pernicious Anaemia
- We provide details of alternative treatments that are available – though we always advise that these alternative treatments should be discussed with the patient’s doctor beforehand
- We lobby politicians to encourage them to call for a complete review of how Pernicious Anaemia in particular and B12 deficiency in general is diagnosed and treated
- We work with medical professionals to raise awareness of the problems with late or wrong diagnosis and are currently campaigning for our members to be offered a choice of treatment methods based on the individual patient’s needs.
- We recruit members to participate in medical and scientific research
- We gather data, analyse that data and make this data available to medical professionals that will form the basis for research into the diagnosis and treatment of Pernicious Anaemia
- We make documentaries
- We host conferences and seminars
What We’ve Discovered & What You Might Like To Know
Some of our members were identified as having extremely low levels of B12 in their blood – but had none of the symptoms of B12 Deficiency. Some members had all of the classic symptoms of Pernicious Anaemia/B12 Deficiency but had B12 levels in their blood that was over, in some cases well over the lower threshold used to determine B12 Deficiency. Even where low levels of B12 is detected, only around half of patients doctors further investigated the cause of the depleted levels of B12 – the most common reason – “the treatment will be the same whether you have Pernicious Anaemia or not”.
A survey of nearly 900 of our members revealed serious problems in patients being diagnosed quickly and accurately.
- 44% were initially wrongly diagnosed as having some other problem
- 22% had to wait 2 years for a correct diagnosis,
- 19% for 5 years
- 4% for 10 years
- 14% waited 10 years or more 1
The biggest cause of complaint by our members surrounds their treatment. In the UK patients receive a 1ml of 1mg/ml every three months following a loading dose of three injections a week for two weeks. The British National Formulary used to recommend an injection every month up until 1974 when it was changed to every two months and then to every three months in 1984. We are campaigning to give patients the choice of how they wish to be treated and how often they are treated.
New replacement therapy B12 products are available but apart from the oral tablet none have been evaluated as to their efficacy. 10% of our members use a form of B12 (methylcobalamin) that is not licensed in the UK. Methylcobalamin injections are marketed as individual brands in Japan and Malaysia and are available at supermarkets. Methylcobalamin is used to treat nerve damage caused by B12 Deficiency – it is advertised as being the cure for neuropathies by repairing damage to the Myelin Sheath. Many members receive Methylcobalamin Infusions in the private sector and self-inject regularly with many reporting relief from the consequences of nerve damage including L’hermitte’s sign.
Many of our members’ symptoms are not often associated with Pernicious Anaemia including sudden and unaccountable bouts of diarrhoea, mood swings, irritability, memory loss, struggling to find the right word or words, confusion and an aversion to bright lights and crowded places. Tinnitus as well as Hypo and Hyper Thyroidism and Psoriasis are the most common co-existing conditions with Tinnitus being by far the most common shared condition. We are working to raise awareness of this among medical professionals.
Some members report that they make a complete recovery from their malaise once replacement therapy begins, but the vast majority of our members still remain symptomatic, to a greater or lesser degree even after treatment has commenced. Pernicious Anaemia can lead to marital strife, divorce, relationship breakdown, children being labelled as having ‘behavioural problems’, employment issues including unemployment, forced career changes and in the worst situations children being taken into care – and this is after treatment to correct the B12 Deficiency has been given. We are working to raise awareness of the consequences of Pernicious Anaemia.
There is still no cure for Pernicious Anaemia and people are still having their cause of death being recorded as ‘Pernicious Anaemia’.
1. Patient Journeys: diagnosis and treatment of Pernicious Anaemia: Hooper M V, Hudson P, et al; British Journal of Nursing, 2014, Vol. 23, No 7
We are a registered charity that exists to provide information, help and support to sufferers of Pernicious Anaemia (PA), including their families and friends. We also strive to improve current and future diagnosis and treatment of Pernicious Anaemia.
The Pernicious Anaemia Society is a company registered in England & Wales, number 07904047 and the United Kingdom’s Charity Commission.
Registered Charity 1147839