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Very useful links

If you would like personalised help, please see the Work with me page for more information.

 

Support groups

We are delighted that we now have our own Community B12 info Forum. Everyone is welcome, wherever you are in the world. Please come and join us!

There are also many Facebook groups dedicated to B12 deficiency but if you don’t use this platform please check out Health Unlocked. Support groups often have their own treatment protocols which may work for some, but their regime may not suit everyone. Remember it’s always ok to find your own balance and to have your own voice.

Please see…..

Our own B12 info Forum

Pat Kornic’s international support group

B12 clinic 

The B12 Institute Rotterdam, was founded by Clara Platell at the end of 2016. This institute is an International centre of expertise for diagnosis and treatment of B12 and folate deficiency

B12 Institute Research Foundation

At the end of 2019, Clara Plattel created the B12 Institute Research Foundation, to research the causes and consequences of B12 deficiency. Its main goals are to adapt the guidelines and develop a patient-oriented treatment. 

Sally M. Pacholok R.N....

Co-Author of Could It Be B12? An Epidemic of Misdiagnoses.

Sally M. Pacholok, RN has been researching B12 deficiency and practicing emergency nursing for 30 years. She diagnosed herself with B12 deficiency after doctors failed to identify her condition at the age of 22. Sally is an international speaker and co-author ofCould It Be B12? An Epidemic of Misdiagnoses. She has been a guest on numerous radio, print, and syndicated talk shows. Could It Be B12? won the Indie Excellence Award for best health book in 2011. It has been translated into Dutch, Slovak, Bulgarian, Spanish, Italian, and Portuguese. In 2012, a documentary was made based on their book. Sally has also co-authored Could it Be B12″ Paediatric edition:What every parent needs to know.

In 2015, a feature film titled Sally Pacholok was created by E.L. Productions, based on the true story of Sally’s lifelong battle to improve our health care system, create a standard of care change, and expose poor practice. The tag-line for the film is “This nurse could save your life.” Sally Pacholok won best feature film at the 2015 D.C. International Film Festival. Cast and crew took home 10 awards at the 2015 TIVA Awards. Sally is the co-author of the new book, Could It Be B12?-Pediatric Edition. What Every Parent Needs to Know About Vitamin B12 Deficiency. Sally is a Trauma Nursing Core Course (TNCC) provider, Emergency Nurse Pediatric Course (ENPC) provider, Advanced Cardiac Life Support (ACLS) provider and an active member of the Emergency Nurses Association (ENA). She received her bachelor’s degree from Wayne State University in Detroit, Michigan, USA.

Visit: www.b12awareness.org 

Dr. Jeffrey J. Stuart D.O....

Co-Author of Could It Be B12? An Epidemic of Misdiagnoses.

Dr. Jeffrey Stuart is a board-certified emergency medicine physician who has been in practice for 20 years. He is certified in Advanced Trauma Life Support, Advanced Cardiac Life Support (ACLS), Advanced Paediatric Life Support and Neonatal Resuscitation.

Dr. Jeffrey Stuart joined Sally to promote public awareness of B12 deficiency after Sally correctly diagnosed his mother’s B12 deficiency which had been misdiagnosed by two board-certified neurologists. Along with Sally, Dr. Jeffrey Stuart co-authored three books on the subject. ‘Could It Be B12? An Epidemic of Misdiagnoses’, (2005) and (2011 – 2nd Edition), Could It Be B12? Pediatric Edition – What Every Parent Needs to Know About Vitamin B12 Deficiency, release date December 2016 by Quill Driver Books-Linden Publishing. 

Dr. Jeffrey Stuart has been testing symptomatic patients for B12 deficiency in the emergency department since 1996. As a result he has diagnosed hundreds of patients with B12 deficiency. Dr. Jeffrey Stuart notes that such regular testing for B12 deficiency is not the current standard of care in the United States, and that potentially hundreds of thousands of cases of B12 deficiency are missed every year.

Visit: www.b12awareness.org 

Pat Kornic...

Pat Kornic’s daughter was diagnosed with pernicious anaemia in 1994 at a time when the internet was still in its infancy.  Information about this anaemia could only be found in outdated books in the reference section of the library. Pat spent many of her lunch hours from work at the libraries in Toronto searching for information but it wasn’t until her retirement in 2003 that she upgraded her computer and began searching the web for information. In early 2005, Pat joined the Anaemia Society, the forerunner to the present day Pernicious Anaemia Society. Later that year, the Anaemia Society upgraded to a larger website and became known as the Pernicious Anaemia Society.  In 2006, Pat became one of its moderators and continued in that position until leaving in 2014. During this time, she was the Canadian Delegate to the Pernicious Anaemia Society and was a member of the Management Council of the Pernicious Anaemia Society.  Pat also started a Facebook Group “Pernicious Anaemia/B12Deficiency Support Group” which offers support and advice to those afflicted with pernicious anaemia or B12 Deficiency.

Pat is the lead author of the following research article Influence of Treatment Parameters on Symptom Relief in Individuals with Vitamin B12 Deficiency 

Henk De Jong...

Henk worked as an Engineer of Electronics near Groningen, Netherlands for 33 years. In 1995 his wife was diagnosed as extremely B12 deficient, sadly this was overlooked for a long time and resulted in serious and permanent neurological damage. When Henk retired in 2001 he created his B12 website dedicated to helping others.

Visit: http://home.kpn.nl/hindrikdejong

UK specific links

If you need help in complaining about your restricted treatment

Free help options blog post

NHS Constitution

NICE Guidelines

BNF Guidelines (9.1.2.)

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B12 Deficiency

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