PA genetics: i have over 30 relatives... - Pernicious Anaemi...

Pernicious Anaemia Society

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PA genetics

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i have over 30 relatives on both sides of my family with PA. I had a Uncle die because his Doctors said his anemia wasn't that bad.. despite them knowing about our family history.his health detouriated fast.Damage was done. When i tell my Doctors about it they act like just stomped on there PHD. Now. I'm showing the same late stages of PA.Insurance

company's​ scoff at CBC and the anemia doesn't warrant intrenic factor test or Bone marrow.Now The Damage Is done and lriverisabe.

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txttuff
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holehead profile image
holehead

Hi

It's shocking that we are treated in this way we are treated and brushed off. Are you in the UK as this would have a bearing on the health guidelines you are operating under? If not are you able to copy your latest blood test results on the site for other members to support you there are many questions to ask in support of your diagnosis and I assume from your post that you have not been diagnosed yet with pernicious anemia. also there are organisations like the PA SOCIETY. Could I suggest you post your blood results in full and ink out any personal numbers etc.

To encourage you not all symptoms are irreversible but you need support from a good GP and become familiar with the guidance on PA

Mark

Sleepybunny profile image
Sleepybunny

Hi,

If you're in USA, then following might be of interest,

1) B12 Awareness website

b12awareness.org/

2) Book "Could it Be B12" by Sally Pacholok and JJ, Stuart (USA authors)

very comprehensive book about B12 deficiency with lots of case studies

3) PAS (Pernicious Anaemia Society) website

Although based in UK, PAS has members from around the world. There is a PAS support group in USA in St Louis, Missouri.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

PAS may be able to point you to useful info

Other B12 info

Some may not apply if you're not in UK

1) Pinned posts on this forum

2) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" By Martyn Hooper. Martyn Hooper is the chair of PAS.

3) B12 Deficiency Info website

Lot of UK based B12 info but may be of interest

b12deficiency.info/

4) Stichting Tekort

Dutch B12 website which has a section of B12 articles in English.

stichtingb12tekort.nl/

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