Spreading The Word #RareNotFabricated

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You will remember from my earlier blog here that I have recently become SWAN UK’s first Volunteer Parent Rep for Wales, covering the Cardiff and surrounding areas.

Well, in October I spoke at the Third Annual Rare Disease Patient Network Meeting, based in Cardiff. The day involved a range of talks from guest speakers ranging from genetic testing, data sharing, the connection between mental health and living with a rare disease, policy changes and both parent and patient experiences. The event went really well, a good mixture of professionals, patients and parents.

I wanted to talk at this event because I feel very passionate about ensuring that not having a diagnosis should not prevent accessing information and support services! I actually found the experience of talking easier than I expected. I purposely didn’t dwell too much on the early years as they were quite difficult times. Instead I focused more on being a good advocate for your child’s needs and how being a part of SWAN UK can be a really good support network when you don’t feel that you ‘fit’ anywhere else. I found it really rewarding to hear such wonderful feedback during the break, and to chat to some new parents who are keen to join our SWAN UK Wales network!

I hope from my talk that the professionals can take on board the anxieties some parents may have, and also include parents fully in all decision making processes to ensure that the correct needs of the child are met and that the relevant support services are put in place. I cannot wait to engage in more public speaking on behalf of SWAN UK! I want to do more talks like this in my role as Parent Rep as it’s really important that professionals work closely with parents (who are often the experts on their child’s needs!) to best support not only the SWAN child, but the family as a whole too.

Without a diagnosis it can be challenging to access the support and information you need. Many families don’t feel that they fit into the wider networks for parents of disabled children, and therefore end up feeling more isolated.

I am really looking forward to developing the undiagnosed network in Cardiff; it’s been a long time coming! I can’t thank SWAN UK enough for the support they offered my family in those early years, where as a parent I felt ignored, belittled and isolated at times.

I’m keen to ensure that SWAN UK families have a voice, and that a label should never restrict access to support services and now I have officially been named as Parent Rep for Wales, it is full steam ahead!

 

To find out more about SWAN UK follow their website https://www.undiagnosed.org.uk/

 Amy Griffiths, Well Being Freedom Services Ltd ©

A Busy Mum’s Summer in Pictures

So, the Summer holidays can sometimes fill a busy mum with dread BUT in reality between all the sibling squabbles and billion demands for a snack, perfect memories are made!  You can read my rather humorous recap of ‘Day One’ of the holidays HERE!

This year we had one of our BEST summers ever thanks to my clever planning ahead!  Our weeks were filled with laughter, holidays, daytrips, friends, family, good food, smiling monkeys, saucy tortoises, detoxing (me, not the babies!), training for a mud run (also me!).  

Here is what this busy mummy and her wonderful babies got up to this summer!

 

Amy Griffiths, Well Being Freedom Services Ltd ©

Well That’s One Off the Cancer Bucket List!

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Well today’s ‘office’ is me on the sofa under a blankie, exhausted, run down and in pain.  But it’s largely self inflicted and I’m so glad it is!

You see since cancer, I’ve been compiling a kinda bucket list in my mind given my second stab at living.  As a result lots has changed over the past two years; relocation to the beautiful Welsh mountains; I’ve completed a further nutrition diploma; I’ve taken up singing again; I’ve re-found laughter; and I’ve shocked myself into loving running!  Yes you heard right!  Yes, me running!  

Some of you will already know that I live with chronic illness in the form of a rare genetic condition called Ehlers Danlos Syndrome (and many wonderful associated aliments) and Secondary Lymphoedema due to the cancer treatment; both which can affect my ability to walk quite significantly at times.  Despite this, I added a rather challenging and bonkers item to my bucket list recently – to complete a MUD RUN!  Yes, totally bonkers!  You will read from my previous blogs how I’ve struggled with my fitness due to my health – you can read them here and here if you haven’t!

This is what I wrote on Facebook on 9th September:

“So, have kept this quietish in case I wasn’t able to take part for health reasons, BUT apart from just detoxing my body & mind, I’ve been training towards one of my bucket list goals since surviving cancer 2 years ago…..Today I’m VERY pleased to say I SMASHED my first ever mud run, completing a 5K course with muddy obstacles in the heavy rain in just 36 MINUTES!!! Not only did I stay in the lead of my race, I actually outran the majority in the race that set off 15 minutes before me!! I’m soooo emotional & what really made it extra special was having my two babies complete the last 100 yards across the finish line holding my hands – MY WORLD & reason I continue to fight living with chronic illness and beating cancer!! xxx.”

I still can’t believe what I achieved!  All by sensibly stepping up my walking over the past 6 months, sticking to a very strict detox and high-protein diet, and shutting out negativity.  Of course this combined with an EDS burst of adrenaline on the day; the celebration to still be alive and the love of my babies is what truly got me through that race and over those obstacles!

I still have to pinch myself; I could literally burst with pride.  I really could.  The haters couldn’t burst my bubble, and nor could the awful downward spiral in my health since as a result!

I’d do it all again in a heartbeat!

 

Amy Griffiths, Well Being Freedom Services Ltd ©

 

Cancer Recovery Diet – Kick the Beast!

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Being diagnosed with cancer is one of the most devastating times in a person’s life.  The shock, denial, the unknown all take its toll alongside the actual cancer and any treatment itself.  This life-changing event can understandably leave you neglecting your diet whilst you struggle to come to terms with your diagnosis and any treatments that are to follow.  However, cancer treatment places a very high demand on the body and good nutritional health before; during and after cancer treatment is important in your overall road to recovery.

Good nutrition will help:

  • Maintain & improve quality of life
  • Help recovery
  • Fight infection
  • Maintain strength & energy
  • Boost your mood
  • Reduce medication/treatment side effects
  • Stabilise hormones

One of the easiest and simple ways to incorporate healthy nutritional foods into your diet is to follow the basic principles of ‘clean eating.’  This simply means:

  • Choosing whole, natural foods
  • Choosing unrefined foods , unprocessed packaged foods
  • Including some protein, carbohydrate and fat at every meal – a good balanced meal contains everything you need to fuel your body, promote healthy growth & keep the immune system balanced. Try planning your meals around your chosen vegetables, filling half your plate & eating these first 
  • Watching out for salt and sugar
  • Avoid caffeine & even decaffeinated drinks
  • Eating five to six small meals throughout the day – aim for two decent sized main meals & a few hefty snacks
  • Consider following a more plant-based diet such as Vegetarian or Vegan, which can help lower inflammation in the body.
  • Include some saturated fats! For decades we have been told saturated fats are damaging to our health, however more & more research is now disproving this theory.  So much so the Swedish Government is now encouraging its people to eat more of it.  When you eat saturated fats as part of your meal, they slow down absorption so that you can go longer without feeling hungry. In addition, they act as carriers for important fat-soluble vitamins A, D, E and K.  When choosing a saturated fat, aim for:
    • Avocado
    • Coconut oil – this is a key saturated fat to add to your lifestyle as it contains many healthy benefits; such as fighting off infections, improving the skin, decreasing heart disease. It also keeps you feeling fuller for longer & helps aid weight loss!
    • Ensure you include only moderately

Ideally we should all aim to eat organically, especially if recovering from cancer.  However for anyone on a tight budget this isn’t always possible.  Try visiting your local farmer’s market where you will often find fresh produce cheaper than at the supermarket, or purchase meats in bulk and portioning them up for the freezer?  Remember, fresh organic produce is FAR more nutritionally dense, meaning not only is it healthier for you, but it takes longer for the body to break down, thus keeping you fuller for longer on smaller portions!  If your budget cannot stretch to organic all the time, then remember many of the tougher fruits and vegetables contain much lower levels of pesticides, but do give them a good clean before using.  Here are some items which are always best to try & spend your organic budget on:

  • Apples
  • Cherries
  • Bell peppers
  • Peaches & nectarines
  • Cucumbers
  • Raspberries
  • Strawberries
  • Spinach
  • Celery
  • Grapes
  • Pears

Most importantly – BE KIND TO YOURSELF!

 

Amy x

 

Amy Griffiths, Well Being Freedom Services Ltd ©

My NEW Exciting Role for Undiagnosed Kids!

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“Approximately 6,000 children are born in the UK each year with a syndrome without a name – a genetic condition so rare that it is often impossible to diagnose. Our Big Ambition here at SWAN UK is that each of these families will have the support they need, when they need it.”

 

SWAN = SYNDROME WITHOUT A NAME

How crazy is that??  Imagine having to live your life with a high possibility of NEVER having answers as to what is causing your issues?  For many (including my own family) this is a reality, even now in this age of vast medical & genetic research!

For most families getting a diagnosis remains just as important to them as their child grows up. Without one families can struggle to access the right support. They have no idea what the future holds for their child or if other children they may have in the future could be affected.

I joined this wonderful charity as a parent approximately 7 years ago after having my first child, and have continued to gain support after having a second child whom is also affected by a rare genetic condition.  I cannot thank the SWAN UK family for all the love & support they have given us over the years & the friends we have made along our journey.

Fast forward to July this year & I received an extremely humbling email from SWAN UK asking me whether I would consider applying for the role as the FIRST Welsh Parent Representative!  I was so excited I actually squealed!  Now I have been casually organising family events for SWAN UK for a number of years, but this was an opportunity to make more of a formal impact in the crazy world of Genetics, meeting professionals, recruiting new families along with supporting existing ones.  HOW THE HELL COULD I REFUSE THE ROLE???  I don’t think I’ve completed an application form so fast lol!

I’m extremely pleased to say I GOT THE ROLE!  (can you tell I’m excited yet???).  I have a few months training ahead, but cannot wait to get started!

 

Watch out South Wales, I’m coming to educate you ha!

 

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SWAN UK is part of Genetic Alliance UK, registered charity 1114195.

 

Amy Griffiths, Well Being Freedom Services Ltd ©

 

 

 

What’s hiding in your ‘healthy’ ice cream??

 

 

 

 

 

With Summer here (well, one or two days of it ha!) we all enjoy a little Ice cream treat, with many commercial companies offering ‘light’ or ‘diet’ varieties aimed at the weight loss troupes.  But how do we know which ones are the healthiest?  Let’s have a look at the content of three different types:

Weight Watchers Vanilla Ice Cream

Weight watchers products are aimed at the weight loss conscious – you see the brand & automatically assume this is a healthier option. But is it really? Let’s look further at the ingredients in detail:

Milk – one of the main allergens in western society, & blamed for contributing to a whole host of medical issues such as leaky gut syndrome & auto immune disorders. Check out one of my favorite bloggers The Paleo Mom here who goes into much further detail.

Skimmed milk – see above, dairy without the beneficial fat!

Sugar – heavily processed & with ZERO nutritional value to us. Causes peaks in G.I. which can lead to diabetes & heart disease in excessive amounts. We have to make the assumption here they have used refined white everyday sugar.

Polydextrose – an indigestible synthetic form of fibre – yes, manmade, fake!

Maltodextrin – an artificial substance usually made from either corn or rice, which gives fat-like body to food products, increases their shelf life, & mixes quite well with other ingredients. It’s also cheap to make & produce. Though not a sugar, it still has a glycemic index of 130 by itself (table sugar is only 65). So unless you are burning off this high G.I. immediately with some intense physical activity, any excess will be turned into fat & stored in the body! So this is a clever way of Weight Watchers getting more sugar into you! & a fake one at that!

Cellulose gel – acts as an emulsion to hold ingredients together, usually made from wood pulp or cotton, & the cheap filler is stuffed into shredded cheese, salad dressing, & ice cream to thicken it without adding calories or fat. It’s also added to shampoo, lovely!

Mono & Diglycerides – are common food additives (E471) used to blend together certain ingredients, such as oil & water, which would not otherwise blend well, thus extending shelf life.  The values given in the nutritional labels for total fat, saturated fat, & trans fat do not tend to include those present in mono & diglycerides.  Mono & diglycerides can be made either from animal, vegetable or even synthetically produced, but we have no way of knowing which type Weight Watchers are using.  Also the chemicals used in manufacturing these additives may well still appear in the finished product.

Cellulose gum – see Cellulose gel

Natural flavor – but what are they & where do they come from?? Are they from organic source without pesticides?

Vanilla extract – a solution containing the flavour compound vanillin, however, this version is very unlikely to be the ‘pure’ variety, so who knows what nasties it may contain.

Artificial vanilla flavor – well the name says it all – artificial, fake, & manmade!

Carrageenan – has ZERO nutritional value, added to many low fat processed foods to make them thicker & fuller. Some research has a shown a concerning connection between carrageenan & gastrointestinal cancer in lab animals, & current research is underway investigating its link with ulcerative colitis & other diseases like diabetes. Read here for more nasties on this ‘natural’ product!

Polysorbate 80 – another binder that’s found not only in food, but medicines & cosmetics too. When tested on animals, this substance was found to cause adverse reproductive effects, cancer & may affect genetic material. Sound like something you want to put into your body?

Vitamin A palmitate – a synthetic version of the essential nutrient vitamin A – yes, another fake!

Is this ‘healthy’ marketed ice cream still sounding like a delicious treat that you want to put into your body?  Didn’t think so!  It’s that clever old marketing machine trying to fool us into believing products from a commercial weight loss programme are healthy for us, when clearly the ingredients can be very harmful indeed!

 

So, now let’s look at an alternative ice cream; Bessant & Drury’s Vanilla Ice Cream.  I have purposely chosen to compare Weight Watchers ice cream to another manufactured shop bought ice cream to make the comparison fair when it comes to shelf life etc.  Let’s see how they compare on ingredients:

Coconut Milk –is the liquid that comes from the grated meat of a brown coconut. Coconut is often referred to as The Tree of Life’, due to its many health benefits – check them out here! Coconut has actually been found to aid weight loss, how brilliant is that!

Concentrated apple juice – high concentrations of vitamins & minerals, ASLONG as its 100% from concentrate with no sugars or additives added. However it’s unlikely to contain much fibre.

Glucose – a sugar found in plants & is absorbed directly into the bloodstream during digestion. Not actually required by our bodies in this form, other forms of carbohydrates can be converted in the body & used instead.

Sugar – ZERO nutritional value, our bodies have zero need for it! Again, causes peaks in G.I. which can lead to diabetes & heart disease in excessive amounts. We have to make the assumption here they have used refined white everyday sugar.

Chicory root –works well as a replacement for fat & sugar, & also contains a decent level of fibre. It also contains Inulin which prevents constipation, helps maintain a healthy balance of good bacteria in the colon, & helps lower cholesterol levels. High amounts however, can cause gas/bloating, nausea, flatulence, stomach cramping, diarrhoea, & constipation. Moderation is the key with this one.

Xanthan Gum – is a form of carbohydrate made by fermenting corn sugar with bacteria, used to bind substances together & reduce ice crystals in ice cream. Corn sugar isn’t a great form of sugar, & is now being linked to a whole host of health conditions such as diabetes & liver damage.

Natural Vanilla Extract –a solution containing the flavour compound vanillin.

Vanilla Pods – contain the seeds from the vanilla orchid plant. These are a good, quality ingredient, even better if organic. Some have linked vanilla as being a sexual stimulant!

Vanilla Flavour – where do they come from?? Are they from organic source without pesticides?

 

In comparison the Weight Watchers ice cream contains a whopping 15 ingredients, many of which are artificial & pose numerous health risks, whereas the Bessant & Drury’s contains just 9, many of which are not too bad.  Bessant & Drury’s ingredients are certainly much more natural & quality ingredients than the Weight Watchers version, with the added benefit of coconut milk to aid weight loss amongst its many health benefits.

 

BUT, if you really fancy an even healthier option, then try making your own!  This is one of my favourite recipes – just 6 totally natural ingredients (make sure you use raw, organic produce though to get the best health benefits!):

 

Raw Almonds – a brilliant source of protein & healthy essential fats that not only aid weight loss but have many other amazing qualities too!

Shredded Unsweetened Coconut– we have already covered above, it has many healing properties & aids weight loss too!

Madagascar Vanilla Bean – a great quality ingredient, use organic of course for the best benefits.

Egg yolks – high in protein, organic ones are great as no nasty hormones have been added.

Honey – use raw honey like Manuka, due to all its healing health benefits.

Water – Nothing too suspicious about that! Try filtered waster if you really want a health boost.

 

But this comparison isn’t just about ice cream, I will be honest!  Did you see the Channel 4 Dispatches documentary on Weight Watchers – How They Make Their Millions?  I did & it was quite an eye opener!  Yes, they remove some fat or sugar from their products, but they then replace them with a whole host of un-pronounceable artificial nasties that can be damaging to our health (as we found above!).

 

 So, before you rush out to the freezer department of the local supermarket, don’t always assume the ‘light’ & ‘diet’ options are actually the healthiest!   Remember, natural organic ingredients are by far healthier & safer in the long term, EVEN if they are full-fat versions!

 

 

Amy Griffiths, Well Being Freedom Services Ltd ©

Does Stress Cause Cancer?

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We all know stress is bad for us.  It makes us feel on edge, become irrational perhaps, affects our sleep and mood, along with causing physical symptoms such as stomach upsets.  But have you ever thought about the damage long-term stress can have on your body?

When stress first occurs, Adrenocorticotrophic hormone (ACTH) is released into the blood from the tiny pituitary gland found at the base of the brain.  When the hormones reach the adrenals (two small glands above the kidneys), it causes their cortex to produce cortisone and other messengers. It’s these adrenal cortex hormones that quickly prepare us to meet the emergency facing us.

Next, protein is drawn away from the thymus and lymph glands and converted into sugar for instant energy, causing a sudden rush in blood sugars. Any other sugars stored in the liver as starch or glycogen can also be instantly converted into energy if needed.  Our blood pressure then increases; minerals are taken from the bones; fat stores are moved; and high amounts of salt are retained.  This is known as the ‘alarm reaction’ and commonly referred to as the ‘fight or flight’ response; our bodies are preparing to battle danger or flee from it.

If stress continues past this point, the body attempts to repair itself, often referred to as the ‘stage of resistance.’  However, when stress is continuous over a prolonged period of time, it can make repair extremely difficult, leaving your body a target for disease; such as cancer for example.

Now, we are not saying that stress causes cancer directly.  BUT if cancer rates are increased by physical carcinogens in our environment, sure the psychosocial carcinogens (i.e. stress) must have an impact too?

Dr Paul J. Rosch, M.D., F.A.C.P. President, The American Institute of Stress says; “What determines resistance or susceptibility to cancer? Behavioral factors and inappropriate responses to stress must also be considered along with genetic factors in attempting to understand why some individuals develop cancer.”  Dr Rosch also goes onto say; “Impaired host resistance due to disturbances in immune system function seem to be an important factor.”

So whilst cancer may not be solely attributed to stress alone; it can and does have a very significant effect upon a person’s susceptibility to the disease; the rate in which it progresses; and ultimately the recovery success too.

Finding ways to manage the external stresses thrust upon us is therefore essential in building our resistance to disease.

So, here are some of my top suggestions for keeping a calmer balance to your life:

  • Good balanced nutrition
  • Exercise
  • Laughter
  • Dancing (you know me, any excuse!)
  • Meditation
  • Mindfulness thinking
  • Relaxation techniques
  • ‘Tapping’ (aka Emotional Freedom Technique)

 

Amy Griffiths, Well Being Freedom Services Ltd ©