DFRL – Stories of people with Pernicious Anaemia

An article I read with the founder of Pernicious Anaemia Society : https://www.martynhooper.com/2010/09/21/277/

Something I found really interesting about this article was the exchange he had when he found out he had pernicious anaemia after taking years to diagnose. Really demonstrating the impact not diagnosing PA can have to the point of hospital admittance.

“What will happen?”

“You’ll have to go into hospital.  You’ll have to have blood transfusions.  We’ll get you in today”

“How long will I be in hospital?”

“We don’t know”

“A day?  Two days?  Three?”

“We don’t know – maybe a lot longer than that”

“A week?”

“We don’t know”

“But you can cure me”

“We’ll sort you out”

“How long will it take to cure?”

“Well, you’ll be on injections for life”.

“What kind of injections?”

“Vitamin B12.  You’ll need lots in the next month and then every three months for life”.

“What do I do now?”

“You go home and wait for me to telephone you.  Make sure that you give your correct number to reception and let me have it right now”

“Can you write down what my diagnosis is?”

“Sure”. He wrote down the diagnosis on a slither of paper that advertised some medicine and I stumbled out of the room.

I returned home and waited.  My sister was on her way to France and I phoned her mobile.  I told her the diagnosis.  “Oh my Gawd” was the unhelpful response.

“I have to go into hospital for transfusions” I told her.  “What am I going to do?”

“Well you just have to be brave” she replied in her best ‘pull yourself together’ tone of voice.  I am not a hospital brave; I am a hospital wimp.

I then mind mapped and wrote down what I feel were the most crucial points from his story- most importantly he explained the importance on the individuals mental wellbeing that a diagnosis can have on someone. This could be a focus for a campaign.

Another good website that I found was http://b12awareness.org/testimonials/view-other-b12-stories/ , although focusing on some more general b12 deficiencies there are personal stories for pernicious anaemia. An interesting story was from an anonymous 58 year old female

 I am female and 58 years old.  In 2004 I started feeling tired and my muscles started to ache.  Over the next 6 years, it was hard to walk any distance and while house cleaning I would have to sit down to rest half way through.  I suffered from intense muscle cramps, and muscles pain all the time.  I was having trouble bending over to tie my shoes, lifting my legs up high enough to put my pants on.  Severe muscles headaches that would wake me up at 1 or 2 o’clock in the morning for over 4 years and in 2008 my digestion started to be impacted.  I started having tingling in my left big toe, which spread to my whole foot and up my left leg.  I still have weakness and tingling in my wrists.  I would lie down to sleep and suffer heart palpitations and would have shortness of breath and half the time I couldn’t sleep.   My younger sister called me late in 2008 to tell me she had been diagnosed with Pernicious Anemia and to tell my doctor which I did.  He never said anything about it.  In fact I was going to his office on a regular basis for the last 6 years for all the above symptoms and I was never diagnosed with anything.

This really demonstrates the lack of awareness that PA has and how people are suffering in silence – another great point for a campaign idea. Or even the thought of an ‘invisible illness’.

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