The following is a draft letter written by Pat Kornic, which she has generously shared with us. This letter can be personalised for your own situation and given to family and friends, it explains what pernicious anaemia/B12 deficiency is and how it affects sufferers.
Pat is Canadian so it was originally written for Canadian PA/B12D sufferers. However for UK members – the only part that would have to be changed is where the frequency of injections is mentioned. In Canada the maintenance dose is monthly and in the UK we know to our cost, that the maintenance dose is quarterly. (This is found in the 5th paragraph.)
Incidentally, Pat wrote this on behalf of a family member who suffers from PA. It is important to note here, that all their symptoms improved once the frequency of B12 injections was increased to suit their individual needs, and that frequency is 3 times per week.
Dear family member, carer, or friend,
Someone you care about has pernicious anaemia or B12 deficiency. I am sure you may have heard your mother or grandmother talk about an aunt or an uncle who had a problem with the food he/she were eating. It seems that it didn’t matter how much meat, eggs, milk or cheese they ate they still had to eat raw liver if they were going to live. Or perhaps your grandmother talks about an aunt who had to have injections and if she didn’t get the injections, she became quite ill.
What do you think when you hear the words pernicious anaemia? Do you think it is just an anaemia and so your family member or friend will just have to take iron tablets and they will be ok. You are not alone in that assumption. Do you know the definition of ‘pernicious’ means fatal? Many people think iron anaemia is the only kind of anaemia and once you take iron tablets or pills you are ok.
Pernicious Anaemia and B12 malabsorption means I cannot absorb vitamin B12 from foods. That it doesn’t matter how much meat or dairy products I eat, I would only be able to absorb 1 per cent of the B12 found in those foods. It also means I cannot swallow a vitamin B12 tablet and expect to get better. I would only absorb 1 per cent of the amount of B12 in the tablet which isn’t enough to keep me alive.
This means that in order to live I now have to have B12 injections for the rest of my life. This is because I lack the protein that is found in the lining of my stomach (called Intrinsic Factor) needed to absorb B12. You see, my immune system thinks intrinsic factor is an enemy and once my body produces intrinsic factor, my immune systems sends out anti intrinsic factor antibodies to destroy the intrinsic factor. This is just one cause of pernicious anaemia.
Did you know my neighbour has pernicious anaemia? He has Crohn’s disease and had surgery on his small intestine. The small intestine is another place where B12 is absorbed once it leaves the stomach. Surgery to the small intestine prevents this absorption process of B12.
There are other causes of pernicious anaemia such as coeliac disease, some prescribed drugs, stomach surgery, chronic gastritis. Any permanent disruption to any part of the digestive tract will interfere with B12 absorption and will over a period of time result in developing pernicious anaemia.
Did you see me fall last night when I tried to go upstairs? Darn, I knew the step was there but it was dark and I just couldn’t seem to find it. I know I fell asleep on the sofa; you are right I seem to be always falling asleep. I did tell my doctor but he said it was nothing to worry about and those injections I get once a month should stop that from happening. But the injections haven’t stopped me falling asleep nor have they stopped the pins and needles I get in my hands and feet. Neither have they helped me with my memory problems because just last week I was at the mall, (I had had a good day and so tried to pick up a few things you had forgotten to get for me) and when I came out, I couldn’t find my car. In fact I couldn’t remember if I had driven my car to the mall or if you had dropped me off. I panicked a bit and then remembered my neighbour had driven me but was she supposed to pick me up? After several telephone calls (thank goodness for cell phones and for programmed numbers), my neighbour found me.
I’m sorry what was the question you asked me again? Oh, you want to know where I put the letter that came in the mail for you? Well I put it..you know..I put it in.umm..umm you know that thingy..No I can’t tell you what ‘thingy’ means right now..it is on the tip of my tongue but I just can’t think of the word…. Oh, you found it..in the Fridge? Odd I can’t remember putting it in the fridge. You know it is as if I live in a fog all of the time.
All of the above are some of the symptoms that occur with pernicious anaemia/B12 deficiency. There are many more symptoms. So the next time you see me fall or ask me something I can’t remember, please read this letter again so you will understand I am sick. That I have an illness that hinders me from doing ordinary, every day tasks. That despite the fact that there is no outward physical indication of my illness, I have a blood disorder that if left untreated, will cause severe neurological damage and even death.
A PA/B12D sufferer
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Best wishes, Tracey