Latest News: Pernicious Anemia Update

August 27 2022

I cannot believe what I had accepted as my new normal over the past few years. I didn’t feel like I had the time, the energy, or the brain capacity to figure out what my issue was. My personality type is just keep going, no matter what.

To say I feel much better is an understatement. Two weeks ago I received a B12 injection every day for a week, plus a 3 hour long iron infusion (as I also had iron deficiency anemia). I had one shot last week (yesterday) and will have one a week through mid-October, then switching to once a month.

Pre-diagnosis it had gotten to the point that I could barely do anything. I forced myself to do the bare minimum, especially the last 6 months. My hand strength had gotten very weak, my feet hurt, my hands hurt, everything hurt, severe brain fog, I was having difficulty with word recall (couldn’t remember the word for things in conversation), I was out of breath after doing the slightest task, light headed.

Last week I had a 20 minute dance session every day, went for a 30 minute swim every day, took Thomas back and forth to TMCC 18 times, went to back to school night at TMCC, volunteered at the library with Lillian, ran many errands, and did not get light headed or out of breath one time. My hand strength has returned, almost everything that was hurting or bothering me has stopped. I may stil have a GI issue and a neck issue, but those are feeling better, too. I will give that some time.

It’s hard to describe what if feels like to feel like yourself again, after many years of not feeling like yourself. I’m extremely excited, happy, motivated, and I wanted to share this with all of you. xoxo

Here’s a great 3 minute video about pernicious anemia:

More information: This from the Pernicious Anaemia Society

Pernicious Anaemia

People who have been diagnosed as having Pernicious Anaemia will be unable to absorb Vitamin B12 from food.4 Until the 1920’s when it was discovered that feeding patients raw, or very lightly cooked liver could keep them alive patients died from the disease. Injectable ‘artificial’ B12 became available after the Second World War and now, as long as the diagnosis is made, people seldom die of the disease. Once the Vitamin B12 Deficiency is corrected patients can live a more or less normal life. However, a great many people still have problems with symptoms after the deficiency has been corrected though doctors don’t know why this is so. When a patient has been treated with replacement therapy B12 then he or she should have their anaemia corrected and therefore will not have any anaemia that will prove ‘pernicious’ (fatal). So therefore they will not have Pernicious Anaemia any more. But the fact is that they will need replacement therapy B12, preferably in a form that by-passes their stomach, for life. They will always need B12 and their treatment should never be stopped. Here’s what the latest Guidelines from the British Committee for Standards in Haematology state:

(testing positive for Intrinsic Factor Antibodies)…
identifies those with a need for lifelong cobalamin replacement therapy.

Cobalamin is the scientific name for B12. Whilst B12 will correct a patient’s anaemia and therefore save his or her life, the patient will still have Autoimmune Metaplastic Atrophic Gastritis (AMAG) and so perhaps it is time to replace the diagnosis of Pernicious Anaemia with this more accurate description of their condition. Note whilst AMAG (or Pernicious Anaemia) can be treated, there is no cure for the condition yet.

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“Words of Alchemy”, published December 2019, is a free-verse poetry memoir covering the last 6 years of my life. The poetry of nature, the poetry of healing, the poetry of appreciation, the poetry of love, in one beautiful book.

Amazing news! My 21 year old daughter, Lillian Darnell’s debut book, “Where Would You Fly and Other Magical Stories” was published January 2018. Learn more and order here

Wonderfully exciting news! My 16 year old son, Thomas Darnell‘s book, Biggest Little Photographer is published. Be inspired! Learn more and order here.