Sally M. Pacholok R.N.
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 of Could 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.
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.
Dr. Jeffrey J. Stuart D.O.
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.
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 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 and co-manages with Andrea MacArthur, a Facebook Group “Pernicious Anaemia/B12Deficiency Support Group” which offers support and advice to those afflicted with pernicious anaemia or B12 Deficiency.
Andrea was in her mid thirties when eighteen months after two consecutive pregnancies she suddenly experienced nerve pain in one foot which then spread to other parts of her leg. A few months later she suffered a mini-stroke, followed by terrible fatigue and weakness. Over the next 13 years other symptoms appeared and she became more and more unwell. Andrea was fortunate in that her doctors did everything they could to try to discover what was wrong, however, no reason was found for all her symptoms.
Andrea had been prescribed acid-suppressants many years before, along with anti-inflammatory medicine which was needed long term. Eventually she realised that the acid-suppressant was causing the very symptoms it was meant to treat and stopped it. By then, it was now suspected that it had greatly contributed to her inability to absorb nutrients from food, leaving her seriously malnourished.
A few years later, by chance Andrea discovered the condition pernicious anaemia and realised she had all the advanced symptoms. Even though her B12 level was still well within the normal range, her doctors agreed to trial injections. Andrea's response to them was instant and spectacular. However, like many other sufferers she cannot function without very frequent injections. Fortunately, her doctors agreed to let her have as much B12 and folic acid as needed in order to halt any further deterioration.
Andrea was so shocked at the the fight so many others have in trying to access an adequate level of treatment that this led her to become a moderator on the former Pernicious Anaemia Society online forum. Andrea also submitted a Public Petition to the Scottish Parliament asking them to help start off a process which will lead to this condition's treatment regime being overhauled and updated.
Dr. Eric J. Norman Ph.D.
In 1982 Dr. Norman in collaboration with the late M. Drue Denton M.D. and co-workers at the Haematology Division of the University of Cincinnati College of Medicine, USA, developed the uMMA test. This test detects elevated urinary methylmalonic acid, an indicator of vitamin B12 deficiency. MMA in urine is more concentrated than in serum MMA.
The innovative uMMA test was fast, sensitive and reproducible and was perfected in 1985, Dr. Norman and his wife Claudia established the first commercial laboratory -Norman Clinical Laboratory to provide low cost test kits for B12 deficiency. They measured levels of MMA in urine using gas chromatography mass spectrometry.
In 1996 they established the first website specifically for providing mailing kits and information for the early, non-invasive detection of metabolic vitamin B12 deficiency.
The uMMA test is more accurate than serum B12, serum MMA and serum homocysteine test, it enables the lab to Identify high prevalence of neurologic disease in vitamin B12 deficient patients without anaemia and the high prevalence of metabolic B12 deficiency in older populations and in individuals with a normal serum vitamin B12.
A celebrated medical researcher, Dr. Norman's work has been published in the New England Journal of Medicine and numerous other professional journals. He has also been awarded the Bronze Star for Meritorious Achievement, and the United States Legion of Merit Award.
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.
Petra was diagnosed with B12 deficiency in 2005. Prior to diagnosis she suffered many neurological symptoms, some of these were quite severe. These symptoms included - poor concentration and memory, difficulty walking, bumping into things, difficulty finding the right words, tingling in arms and legs, nerve and muscle pain, no appetite, nauseousness, diminished reflexes, and sadly there were many more.
Petra was very lucky, her B12 results were low and her doctor thankfully treated her as an individual. He gave as many B12 injections as she needed and taught her to self inject. As we see more often in those who are B12 deficient Petra was also deficient in folate, iron and vitamin D. Fortunately after 5 months of the correct treatment almost all of Petra's neurological symptoms disappeared.
During Petra's search for more information she found the site created by Henk de Jong. She soon became a moderator on the forum of Henk's site and also on the early Pernicious Anaemia Society forum.
The stories she read detailing years of misdiagnosis and of sufferers not receiving the correct treatment she was inspired, along with three other sufferers in 2006, to create a foundation. This foundation is dedicated to raising awareness, and spread information about B12 deficiency to both patients and health professionals.
The foundation's informative website gives access to scientific articles, and a very active forum where patients ask questions and share experiences and tips, The foundation also organises 'Patient information days', and much more.
Petra hopes that in the near future, all sufferers will be treated for their deficiency in time, so that they can achieve complete reversal of severe symptoms.