Exposed Forehead

So today I undertook a hair shave to raise money for the MAP vaccine – a possible cure for Crohns. I have had lots of great compliments on my new look which has helped bolster my recently flagging self confidence. My husbands response?

I never realised you had such a big forehead 🤣🤣

#crohnsdisease #crohns #crohnswarrior #autoimmunedisease #mapvaccine #crohnscure #ibs #colitis #justgiving #hair #fundraising #headshave

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Doh!

So I left Home early to swing by Argos and pick up cordless clippers for my big hair shave tomorrow ….. and drove right past! I did have a barber lined up originally but my lucks as bad as my ditziness!

Good Luck Spell

So 3 days to go to head shave and I’m short of a barber. Decide to cook with Lindisfarne mead (I know it’s sweat but hoping to cast a good luck spell or something) only to find I had to Jack open the bloomin bottle! #lindisfarne #mead #spells #witches #ketofail #paleofail #lactoseftee #glutenfree #barberneeded #iwillnotpanic

A Womans World

I’m not a feminist. In fact I think we’ve given ourselves a hard deal – working full time whilst still maintaining the household as taught in Home Economics in the 70’s! But today I was reflecting on how Great Britain is not an equal society. The cause of my reflection? Toilets. This is something that has bugged me for a while but come to fruition over the last few days of travelling. Why are the women’s toilets always further away from the men’s? As if we don’t have enough to do ….. and just as I was reflecting on this I went for a pee in a place where women come first 🤣🤣 #homeeconomics #1970’s #equality “womenslib #toilethumout

The Big MAP Shave

On 27th July 2018 I will be having my hair shaved to raise money for the MAP Vaccine – a potential cure for Crohn’s disease.

My son  Jack  was diagnosed with this disease 18 months ago and has had several hospital admissions since – both directly due to Crohn’s and due to the immunosuppressant medication that is given for this. At Christmas he acquired a fungal infection in his blood and was treated for sepsis at JPH and latterly the actual cause. If it were not for the quick thinking ambulance crew and the staff at JPH he would not be here today, so a huge thank you to all the staff involved. During Jacks last admission, one week before he was due to fly away to Australia for a year, I started researching more about this disease and came across the MAP vaccine and the potential to cure this awful disease. Jack has had to postpone his flight and has just been admitted today to remove part of his bowel.

What is Crohn’s Disease? (CD)

Crohn’s Disease is a debilitating and aggressive form of Inflammatory Bowel Disease (IBD) that can affect any of the gastrointestinal tract. It effects an estimated 4 million people worldwide including around 250,000 in the UK, with numbers increasing especially in children.

Symptoms include severe abdominal pain, weight loss, bloody diarrhoea, nausea and vomiting and chronic fatigue. Approximately 80% of patients will need surgery at some point in their lifetime to remove part of their bowel and many will end up with a stoma bag. The lives of most are blighted by hospitalisations, surgeries and immunosuppressant therapies which have many nasty side effects, including cancer. As a result many people have difficulty holding down a job or attending school.

There is currently no cure for Crohn’s and no cause is officially recognised. However, the team at Kings College Hospital in London believe there is compelling evidence pointing to MAP as the cause of Crohn’s Disease and their research could well lead to a potential cure.

Immunosuppressant’s can reduce Crohn’s symptoms by lessening the inflammatory reaction in the gut wall. Antibiotics like metronidazole can reduce Crohn’s symptoms by killing off other bacteria which invade the gut wall. Bland diets can reduce Crohn’s symptoms by removing some of the irritants which trigger more inflammation, but unless you treat MAP itself, you are only treating the mechanism and not the cause of Crohn’s Disease. That is why we need this therapeutic and preventative modern Vaccine.

What is MAP?

MAP is a type of bacteria: Mycobacterium avium subspecies paratuberculosis (MAP). It belongs to a family of bacteria called ‘Mycobacteria’, which also includes Tuberculosis and Leprosy.

MAP is proven to cause Johne’s Disease, a form of inflammatory bowel disease affecting domestic livestock, which is strikingly similar to Crohn’s Disease.

Almost everyone with Crohn’s has a MAP infection…

MAP is very difficult to detect in people because you can’t see it under an ordinary microscope and it is very difficult to grow. Using a new diagnostic test for MAP which Prof Hermon-Taylor and his team are currently developing, MAP can actually be SEEN in the blood and tissues of people with CD for the first time ever and has so far been detected in 100% of CD patients tested (unpublished data).

…but not everyone who is exposed to MAP gets Crohn’s Disease:

Surely if Crohn’s was caused by an infection, more people would have it? Not so. Just as it was 100 years ago when people were widely exposed to Tuberculosis (a distant cousin of MAP), not everyone who came into contact with the bug got sick.

What determines who gets Crohn’s and who doesn’t?

  1. The form of MAP to which the person is exposed:
  2. The dose of MAP to which the person is exposed and the frequency of exposure
  3. The susceptibility (both genetic and acquired) of the person concerned

What is the difference between those who get Crohn’s and those who do not?

It actually comes down to a form of Immune Deficiency; our bodies have several levels of defences against invading bugs. The most basic defence cell is a type of white blood cell which behaves a bit like ‘pac-man’! It patrols the body eating up and digesting any invaders. Then there are the more sophisticated white T- cells, specifically designed to defend us against bugs which hide INSIDE cells in the body –like MAP.

When healthy people are exposed to MAP, their pac-man cells gobble up and digest MAP and their T-cells ‘see’ and eradicate any MAP-containing cells. They may retain a few isolated bugs but they never get sick. When someone susceptible is exposed to MAP, it is a different story. Their pac-man cells eat MAP but cannot digest it and MAP remains, happily living inside the cell. In addition, their T-cells are ‘blind’ to MAP; they cannot eradicate it and MAP is allowed to multiply unchecked, generating vast numbers of organisms inside the gut as well as other tissues (even inside the T-cells themselves). This is the person who develops Crohn’s Disease.

How does MAP actually cause disease?

MAP itself does not directly cause gross inflammation by taking on the immune system head-to-head. In fact, MAP minimises its own immune recognition. Instead it initiates a cascade of events with disastrous consequences. The first is to cause dysregulation of the immune system which then destabilises the gut wall, rendering it leaky. Leakiness of the gut wall allows it to be penetrated by other gut organisms (e.g. bacteria such as E.coli, yeasts and viruses) and irritant food residues. It is these secondary invaders and irritants that cause the massive inflammatory response which creates the Crohn’s pathology. The second is to directly damage and inflame the delicate nervous system in the gut wall.

So how far are we?

Prof. John Hermon-Taylor has been working on his MAP theory and since 2007. He is now retired but remains a fundamental part of this research and appears as passionate today as ever.

His team started the second set of human trials in April this year and, it is hoped that by the autumn, they will be well on their way to curing Crohn’s.  Every stage of the MAP vaccine has been supported by fundraising only. If this is successful Crohn’s patients can have injections to eradicate the MAP virus and CURE their Crohn’s disease once and for all.

Please help us, to help Professor John and his team at Kings College London, to continue with the development of this potentially amazing cure which could bring relief to so many. You can do this either by sponsoring us and/or coming to cheer us on in surgery on at Kirkley Mill Surgery in Lowestoft on:

Friday 27th July 2018 at 1.00pm

To donate please to go to:

Just Giving (justgiving.com) and search for:

The Big Map Shave

#crohns #crohnsdisease #autoimmune #immunosuppressants #crohnssurgery #antibiotics #crohnscure #mapvaccine #fundraising #hairshave #justgiving #IBD #antib

Thank you so much for your support