I'm raising money to raise awareness of Pernicious Anemia, a disease that I'd never heard of until I was diagnosed with the condition in 2015.

Sadly, although the disease is quite unknown, a vast number in the UK suffer from Pernicious Anemia or low B12. The progression of the disease is insidious and a lot of the symptoms are common to many other illnesses. Misdiagnosis and mistreatment are rife; MS, ME, Chronic Fatigue, Fibromyalgia, Depression, Psychosis, Dementia; all but a few alternative diagnosis. The public and the medical community need more awareness of this debilitating disease. Once it is diagnosed it CAN be managed reasonably well but if it goes unnoticed it can be a killer.

My own story unravelled over 5-6 years. One moment I was competing in triathlons and the next few days I would be collapse with fatigue. That's because I'd stopped being able to absorb vitamin B12, a vital building block for just about every body system from nerves to hair to brain function.

I knew for quite some time that I was more tired than most but put it down to triathlon training and workload. Over time, the symptoms got worse. I had stomach upset after stomach upset, my hair began to fall out, the sides of my mouth cracked and I started to do (more) daft things. I lost my sense of balance and sometimes couldn't process the world quick enough - I'd fall over when running or fall off my bike. I'd have long periods of sighing and gasping for air (my red blood cells had become unable to collect oxygen and deliver it around my body). I forgot how to speak in sentences, forgot colleagues' names. I would get up, shower, then be too exhausted to do anything else and go back to sleep for hours. But sleep was never enough.

During the decline I repeatedly visited my GP and saw consultant after consultant: Endochrinologists, Gastroentorologists, Neurologists. I even had an MRI when my GP said it was time to start thinking about Multiple Schlerosis. My liver was checked, I had endoscopies, glucose tolerance tests, collected 24 hours' of pee in a flask, heart rate monitors for a week. I was put on a Low FODMAP diet, a hypoglycemic diet, told I was possibly pre-diabetic, told I might be a Refractive Coeliac. I hate to think what the cost to the NHS was.

Yet not one of the 9 specialists I saw spotted my B12 bottoming out. Eventually my GP was the one to spot it and put me on an initial 2 week loading dose of 6 injections, every other day, costing 17p each. I started to feel whole again, literally, my nerves began to work again and I became recharged with energy. Within 2 weeks I felt the best I had done for years.

After the initial doses I was told I had to wait 3 months for another injection. After 2 weeks I was back to sleeping 16 hours a day, dragging myself out to try to keep a job and a house running. My GP agreed that I needed closer doses and reset my wait period to 8 weeks. His hands were tied, he told me, he was not allowed by the CCG to give me any more.

This is when I met the Pernicious Anemia Society and began to get help from them. Their advice was invaluable. I have found an alternative treatment path that suits me. After an initial 2 year recovery, I've been able to keep myself well for over a year now and been able to start working full time and exercising again. 

I am one of the lucky ones. I found the cause of my problems but for many those odds are stacked against them: poor public awareness, poor medical awareness, poor diagnosis and poor treatment. With the help of the Pernicious Anemia Society those odds are starting to change.

Please support me in raising money for PAS, and helping them change lives.

Pernicious Anemia Society Mission: 

To secure a full and comprehensive review of the way in which Pernicious Anaemia is diagnosed and treated that will lead to more timely diagnoses and better treatment by: 

Providing information to patients and health professionals

Providing help and support to patients and their families 

Engaging in research with the health research community 

Lobbying decision makers