Martyn Hooper MBE – Chair of the PAS

~ The Chair’s Blog ~

Another Shocker!

by | Feb 10, 2015 | 2 comments

I like to think that I’ve become ‘case hardened’ over the years – case hardened to the way in which some patients are treated, or, in the case of 15 year old Bella Rockchic (not her real name you understand) not being treated.

It was Bella’s mother who first made contact with the society’s office.  I don’t have a full transcript of the conversation but she told me that her 15 year old daughter had been ill for years suffering from the symptoms of severe B12 Deficiency.

“She’s continually tired, attends school only for a few hours in the morning then comes home and sleeps for six hours – more if I didn’t wake her.

“She has problems with her concentration and memory, she’s irritable, has severe sudden mood swings and because of all this she doesn’t have a social life at all”.

It was a tale that I had heard before and of course as I mentioned in my first book ‘Pernicious Anaemia: the forgotten disease‘ it is the tale of teenagers with Pernicious Anaemia that I find most frustrating and which sadden me most.  However, it’s what Bella’s mother went on to say that really worried me.

“Now she’s having problems walking, her hands and feet are extremely painful and she’s getting pins and needles.”

“We managed to get her doctor to give her an injection of B12 every week for a month over Christmas and we couldn’t believe the difference in her – we even caught her smiling for the first time in years” she said.

It was at this point that I suggested that she and her daughter come to see me so that they could discuss the options available to them.  They duly arrived after a three-hour car journey on Thursday of last week.  What I saw startled me, but I have learned that rather than getting angry it is best to channel my energy into bringing about change in the way in which PA is diagnosed and treated – and this change will only come about by exerting pressure on those in authority to conduct a thorough review into the current issues affecting the disease.

Bella was a pretty young girl who was slightly built.  As she walked towards me I was reminded how I walked immediately before my diagnosis – just like Herman Munster or an early portrayal of Frankenstein in films.  My heart sank; what kind of future lay ahead for this young lady?  What could I do about it?

Her Mother, Father, Bella and I began to tell their sad tale; how this deterioration had been going on for years; how doctors didn’t seem to believe them, how a few pennies worth of injections had turned her outlook around and how they felt right now – helpless.  I was glad I was able to help.  I suggested that they print out the bulletin of the new guidelines from the Library section of the website and hand it to Bella’s doctor;

“We’ve done that – he wouldn’t read them”.

We discussed over the counter remedies including the new sub-lingual spray which interested them as they had been using it though only sparingly.  And it was then that I told them about doctors who practice IV infusions of Methylcobalamin and self-injecting sub-cut Methyl as often as they saw fit – and that was when I could see that they had, for the first time in many years some hope of dealing with Bella’s problems.  I provided them with the name of a few doctors near them who would be able to help and they left the office a lot happier than when they had first arrived.

I couldn’t be sure but as Bella shuffled away I thought she had a slight spring in her step.

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  1. Jo

    Bless her, let’s hope she gets the treatment she desperately needs, as quickly as possible.

  2. Sarah

    It’s shocking how some people are treated or should I say not treated?


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