I am delighted to announce our second event and Sally Pacholok will be with us again!
I am delighted to announce our second event and Sally Pacholok will be with us again!
This little fella spent a long lime in hospital as a child following a diagnosis of Perthes disease (Legg-Calvé-Perthes disease). Perthes is a childhood hip disorder caused by a disruption of blood flow to the ball of the hip joint.
By the time he was 30 years old he had suffered his first heart attack.
He died aged 37 following his third.
Just prior to his first heart attack he experienced intense jaw pain whilst digging the garden and his face drained of colour. In between the 2nd and 3rd attacks he experienced flu-like symptoms but no chest pain and none of the other classic symptoms associated with heart attack. These details were a surprise to me and may be to you too.
This handsome young man was my dad and I inherited many things from him including his hair, a love of woolly jumpers and furniture making skills. (I don’t make a habit of keeping model aeroplanes under my bed though).
Amongst those interesting traits, I also inherited a clotting disorder; Factor V Leiden (FVL) and a myriad of genetic polymorphisms many of which are connected to B12 and folate methylation. (MTHFR, MTRR, MTR,CBS, and BHMT, to name a few).
No one knew why my dad had heart attacks and died so young and it has long remained a mystery, apart from his limp left over from Perthes disease, he appeared to be a fit and healthy young man.
I learned that I had FVL when I was trying to conceive and found that Perthes’ disease also has a connection to FVL. (see refs below).
With the help of genetic testing and the unravelling of my own medical history since being diagnosed as B12 deficient, there are now clear indications of my dad’s underlying B12 and folate methylation problems.
These coupled with an undiagnosed clotting disorder could have contributed to – or could perhaps be the cause of his death? I wouldn’t mind betting that he had a sky-high homocysteine level but it’s doubtful that testing for this would have been on any radar and even today it’s tricky (if not impossible) to persuade a GP to test.
High homocysteine is known to be strong risk factor for cardiovascular disease, it is a an amino acid which rises to a toxic level in patients with low, B12, B6 and B9 (folate). If a high homocysteine level is present and the patient also has FVL then research shows there is an even greater risk of Cardiovascular problems.
I was thankful that the GP I saw upon diagnosis of my B12 deficiency seemed to understand the problems associated with FVL and low B12 and I was reassuringly told -‘We’ll have to look after you’. Sadly this statement was quickly forgotten and the silly games regarding strict rationing of life giving B12 injections began.
I contacted many cardiologists to invite them to the conference we held in May but there was a total lack of interest. They receive millions of pounds in research grants but they don’t appear to want to look at the basics. It is a crying shame they didn’t hear Sally Pacholok and Malcolm Kendrick speak, but when their research money comes from pharmaceutical companies I expect they feel their hands are tied.
On health questionnaires we are often asked if we have a history of certain conditions, it seems that with a shrug of the GP’s shoulders, you must understand that you may succumb to heart attack, Alzheimer’s, or bipolar if they are prevalent conditions in your family (they are in mine). That you just have to take it on the chin and await what comes your way.
Many of us who read and research B12 deficiency, join up the dots early. We know that these conditions and many more can all be related to low B12 and that if we are given vital B12 injections at the frequency we need then we can live healthily and happily. We may also feel that the outcome for many of our loved ones might have been different had the full knowledge of B12 deficiency been available to the clinicians in charge of their care.
We want our doctors to discover and understand this too so we send them journals, advise them to read ‘Could it be B12?’ We lay the facts out in black and white, but we are often ignored, ridiculed and neglected. We understand that this action of trying to educate is irritating to doctors but what else can we do?
We are fighting for our lives whilst we wait for the medical community to catch up.
To see who is at risk of B12 deficiency, please click here http://www.b12deficiency.info/who-is-at-risk/
Raising awareness; http://www.b12deficiency.info/how-you-can-help/
Please sign and share this petition, let’s get it over 10,000 signatures; https://www.change.org/p/ian-hudson-please-make-our-life-saving-injectable-vitamin-b12-hydroxocobalamin-available-over-the-counter?
Best wishes, Tracey
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Severe hyperhomocysteinemia due to cystathionine β-synthase deficiency, and Factor V Leiden mutation in a patient with recurrent venous thrombosis.
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J Med Assoc Thai. 2000 May;83(5):536-42.
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Role of polymorphisms in factor V (FV Leiden), prothrombin, plasminogen activator inhibitor type-1 (PAI-1), methylenetetrahydrofolate reductase (MTHFR) and cystathionine β-synthase (CBS) genes as risk factors for thrombophilias.
I want to say a huge thank you to the fantastic four; Sally Pacholok, Lorraine Cleaver, Umahro Cadogan, and Dr Malcolm Kendrick – who all have more than one thing in common;
A passion for educating and exposing truth, unflappable tenacity and humour!
Sally Pacholok, as we with B12 deficiency know, is an inspiring educator who diagnosed her own condition and is completely dedicated to raising awareness of this condition. The vast amount of information Sally imparts in just 2 hours, is incredible.
Her time in the UK was spent working almost solidly and even during her sparse free time managed to help patients in a profound way. Anyone reading this who would like Sally to speak at an event then please get in touch, you won’t look back!
Lorraine Cleaver told us of her shocking experience of thyroid disease, her planned suicide and her road back to health after appalling treatment due to ignorance. She also recounted Jill’s story, which echoed her own experience as Jill remained undiagnosed with B12 deficiency and Graves disease for years. Jill was subjected to ECT (Electroconvulsive therapy) in place of what her body required. This presentation was profoundly moving.
Umahro Cadogan became so ill in his teens that he too had to become his own doctor. He has made it his life’s work to educate himself and others on nutrition and nutrigenomics. His presentation on methylation, a hugely complex subject, was expertly delivered making it accessible to all.
Dr Malcolm Kendrick talked about the shocking state of accepted medical data. He is the kind of GP we all want, sensible, caring, humorous. He sorts the wheat from the chaff and is determined to shine the light on the dark corners of medicine. I have followed his blog for years and if you don’t already, then sign up!
Pic. Dr Jeffrey Stuart, Sally Pacholok, Umahro Cadogan and me.
Just a couple of hours after the conference emails started to arrive from delegates and I was stunned and delighted, here is the first;
“ Thanks for organising the excellent conference today. I was delighted to attend and learnt a lot and met some lovely people. The speakers were all very engaging and enthusiastic.
I don’t think I have ever been at a conference that so many people stayed until the end, especially on a Saturday! That is testament to the line-up you organised. Well done. I hope it makes a difference.“
Dr J Younge –
Well, judging by my inbox there has already been a huge shift – the day really can be labelled ‘A Game Changer’!
Dr J Younge sums it up perfectly, the delegates were completely engaged right up until the end.
For those of you who attended you will know that there was an impressive (and surprising) number of health professionals across all disciplines who attended and who thankfully took the time to write;
“Congratulations on organising a really interesting day.
The speakers were excellent and inspiring and gave us plenty to think about!”
Dr S Williams
For those of you who couldn’t attend – I promise there will be more events in the future. (I have never done this before, but I really enjoyed it!)
It worked because of the quality and mix of the speakers, and because of the connection between all of the subjects. Those who came are now determined to make a change.
It was a fantastic day and I have learnt a lot about how to make it even better next time.
Heartfelt thanks to Dr Jeffrey Stuart and of course to Damian Witty.
Thanks to all who supported me in organising this event – you are priceless!
www.b12deficiency.info is my passion, highlighting the effect on mental health, fertility, pregnancy and children is a must.
If you want to help us to access Hydroxobalamin OTC please sign and share this petition.
Lets continue to work together, we will make a difference, please contact me if you would like to learn more.
I am sorry I haven’t been here for a while, I have been arranging a conference on B12 deficiency, thyroid disease, genetics and data. (www.b12deficiency.info/conference)
Anyone who reads this blog knows how difficult it can be to access correct treatment and understanding of their condition.
I hoped (and still hope) that the 16th of May would go a little way towards helping to change this, however it seems I may be wrong!
The fact is, I have hand delivered personal invitations to nearly 200 GP’s local to the area. Others have emailed invitations, asked their own GP’s to attend and tweeted the event too, thank you all. I have sent hundreds of invitations via email to NHS organisations, health educators and healthcare professionals and the response has been DISMAL.
Amongst those who have booked are psychiatrists, pharmacists, acupuncturists and nurses, so all is not lost and there is still time for those who have been invited to stump up and turn up to what promises to be an excellent day. (I still have faith!)
I was warned that GP’s wouldn’t attend – that they are just not interested, that they only go to free events, usually free thanks to pharmaceutical sponsorship. Who knows the real reason, perhaps they are all at weddings?
I do know there are some GP’s who are up to speed on both these conditions, however the vast majority are not. These petitions are testament to this fact –
Lorraine Cleaver – Effective thyroid and adrenal testing, diagnosis and treatment.
Andrea MacArthur – Updating of Pernicious Anaemia-VitaminB12 Deficiency understanding & treatment.
Here’s what GP Margaret McCartney has to say on this subject –
Margaret McCartney: Forever indebted to pharma—doctors must take control of our own education
“A colleague told me that attendance plummeted when she decided to end the pharma sponsorship of an annual educational event and to charge doctors £40 each instead. Are we so culturally attached to free education that we don’t care about the price? A £40 fee is hardly robbery, and free education is not worth the unwritten debt to sponsors.
At these events it’s also often unclear what vested interests speakers have until they flash a slide at the start of their talks. We should insist on seeing a full declaration of potential conflicts and sponsors before we sign up.
By deciding what we need and what we would like to learn, we can set our own agenda rather than be the recipients of someone else’s…..”
I wish I could shoulder the cost of this event and offer it for free but I can’t, however there are NO SPONSORS and NO AFFILIATION with anyone selling a drug or a supplement, it is not for profit.
Everything I do to raise awareness of B12 deficiency is personally funded by me and my husband Damian, because this condition has affected us so profoundly and because we care about those in the same boat (and indeed in the ‘connected boat’ of thyroid disease). There are many of us spending countless hours voluntarily, working to raise awareness and support sufferers of both conditions.
The £62 ticket price covers the cost of the event; food, refreshments, technical staff, technical equipment, building hire, printing, promoting, and the minimal expenses of four excellent speakers on interesting and vitally important topics.
People who have an interest in the subjects, who are not health care professionals, do want to come and were previously excluded – I’m sorry this was a BIG MISTAKE.
Those of us with these conditions may be aware of the effects they have on mental health, fertility, children, cardiovascular health (etc,etc) but it seems that the vast majority of our GP’s and medical educators prefer to stay in the dark.
The aim was obviously to educate the people who in turn can help us. The polypharmacy we are subjected to thanks to this knowledge gap, is out of control. Patients are taking more and more drugs to modify symptoms while the root cause is ignored.
It is very clear that we, the patient, have to continue to learn as much as we can about our conditions in order that we can then try to teach those who ‘care’ for us.
I am saddened that this is the way it has to be and that even though we didn’t choose medicine as a career, we continue to be forced to study it.
Lest make this event a catalyst for change. If you can come we’d love to see you there.
Where: Loughborough University
When: Saturday May 16th (9am – 6pm)
Inc: Lunch, free on-site parking, post conference webinar and attendance certificate (upon request)
For further information and booking please visit www.b12deficiency.info/conference
The past twelve months have been filled with a schedule of hard work for Sally Pacholok.
The long awaited film based on Sally’s life by Elissa Leonard and a new book of childhood B12 deficiency, add up to a momentous year.
The world premiere of the film will be held at the US Naval Heritage Center, Washington on the 28th of February. Sally is played by actress Annet Mahendru. http://dciff-indie.org/sally-pacholok/
You can have a sneak preview here! http://vimeo.com/user8814977/review/118546403/ec3a094649
‘What is wrong with my Child? – From Neurological and Developmental Disabilities to Autism…….How to protect your child from B12 Deficiency’, will be released on the 15th of March and can be pre ordered from Amazon now;
All this news brings anyone with B12 deficiency a sense of great hope for increased awareness of this condition in 2015.
Sally Pacholok is dedicated to the job she loves, she works as an ER nurse and remains on the frontline of identifying patients with this condition on a regular basis.
There are many of us who are alive and well now because we armed ourselves with information from ‘Could it be B12?’ The life saving manual written by Sally and her husband Dr. Jeffrey Stuart.
Research from this book was used to create the ‘Are you at Risk?’ B12 deficiency smart phone app which can be downloaded here;
Raising awareness; http://www.b12deficiency.info/how-you-can-help/
Best wishes Tracey