My life in Science whilst raising a child with type 1 diabetes

Biomedical Science, Type 1 Diabetes, Coeliac Disease and other findings


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IBMS Congress from a student perspective

2015-09-28 13.30.33Yesterday, I traveled down south from Glasgow to Birmingham, for the IBMS congress at the ICC.  On my part, this was a mixture of career planning, travel enthusiasm and escapism if I’m honest (who let mum loose?).  Who doesn’t like day trips? (insert Beatles song here).

Also, I want to be proactive about my career. It’s a great combo!  Since the flight was cheaper than travelling to Edinburgh for the day, I thought why not? I was eager to meet people who are passionate about biomedical science from other walks of life.

Expectations

On arrival, I found Birmingham looked like an up and coming city. I felt full of  “spring” in my step! The newly opened New street station was certainly worth my visit, if all else failed.  However, I was full of purpose, so didn’t hang around much to be honest – heading straight for the ICC on a mission.   2015-09-28 13.22.55I had expectations of chatting with scientists, and professionals on current treatment options/diagnostics and you guessed it… all with a bias towards autoimmune conditions. So where was Medtronic?

Students of Biomedical Science unite!

The student expo, as aimed at undergraduates wondering where this ‘broad-ranged‘ degree will take them.  Sarah May, Deputy Chief Executive of the institute highlighted the routes into working for the NHS and options which may be available to a new graduate – more often than not – a laboratory support role.  These jobs are marketed at pay band Grade 3 (NHS grading)  for those without any qualifications, which may seem like you’ve hit disaster after 4 years of hard slog, and brain-bashing theory to gain a piece of paper, which you didn’t need to begin with! Don’t be disheartened was the message, students with the BSc(hons) degree can progress from these roles within the NHS, and aim to specialise in a chosen niche – look at it, as a step in the door.  For those who wish to be at the forefront of diagnostics, and feel the support of the largest employer of BMS behind you, then I feel this could be a great career.  Also, a wonderfully, inspiring talk presented by Sgt Colin Hudson of the Royal Air Force left me feeling amazed at the capabilities of scientists in the most difficult of places and circumstances a person could ever be asked to face.  This also made me feel a little sad, because my son can never apply to the forces due to his medical condition, but it is good to know there are strong minded, focused and extremely capable scientists meeting the needs of those at the face of human crisis on our planet.

I personally was very interested in the talk by Dr Sue Jones, from York St John’s university.  I am not a young undergraduate, and have come to biomedical science as a second career. Therefore, I have strong determination and deep personal reasons for being interested in completing this degree. I carry with me experience of treating a child with a severe life threatening medical condition, and this gives me a double-sided view of why research is vital, why it is important to network and sell products that vastly improve patient’s lives.  I am that customer.  Which leads me onto the exhibition.

Exhibition hall and the big names in industry including Leica, Abbott, Siemens and the list goes on…

At break, we ventured into the massive exhibition hall to wonder at the latest and greatest of diagnostic equipment, laboratory aides and tools.  I chatted with a few exhibitors about my student experience so far and well wishes all round were exchanged.  I personally felt like a child in a sweetie shop – literally, due to the fact every stand was happy to supply everyone with a quick sugar rush. Ironic? … discuss.

From a student perspective, I felt the career aspect of the expo was vital to anyone who has not thought about the different routes to follow after the undergraduate degree.  I got chatting to a few students from universities in England, about the differences in their degree programme and mine, but one thing remained the same, these degrees are very popular in the UK. There is widespread competition and we all need to aim for more experience in the lab if we want to stand out from the crowd.  If it is financially viable, to gain lab experience at your university or research institute, then keep trying – I know I found my summer work experience invaluable.

Finally … let’s not avoid the elephant in the room any longer – Earning potentional!

There is an element of “but when will I get paid?”,” When will I earn from this degree?” and I admit, I have thought that quite often. I do have two children and a mortgage and without my husband’s career things would be very different for our family. Nonetheless,  I try to hold onto the dream and hope I had at the start of this route for a specific reason, and that was to help make my son’s life easier, to understand the mechanisms behind his wonky immune system, and to try and work alongside researchers who also feel as passionate about that as me.  Currently, I have no delusions about earning the best wage.  I know that applying for funding for a PhD is highly competitive.  As is, finding that job that makes all this seem worthwhile. Basically, I have admired a certain researcher for the past few years who works at Massachusetts general hospital in Boston, USA – so quite a far travel for someone from Ayrshire, Scotland. It does all seem like a pipe dream to me, but not one I am willing to give up on just yet.  For those who wish to enter the NHS, there is also the delayed potential to earn a band 6 wage – which could take quite a few years post-graduation.  In summary, why should we not go for sales jobs? I’ll leave that to you to answer, It is a very personal answer – but please feel free to share your own experiences.

When you walk around the exhibitors hall, it can be quite an eye opener to see the ones who make money from biomedical science. But if you are passionate about the subject, it could be you who helps to write the rule book, who aids the invention of the next immunoassay or who writes a paper leading to the improvement of millions of lives.  We certainly wouldn’t be living with some of the best technology for managing type 1 diabetes without some of the best research and pharmaceutical involvement in the world. medtronic-cgm

So without coming across as a cheesy motivational speaker, I would like to finish up by saying, it would have been wonderful to be able to sign up to attend a talk listed on the plenary. If this was an option (I’m not sure if it was), I would have loved to hear the talk by Dr Claire Guest – CEO of Medical Detection Dogs (I know of a family who have a dog that responds to a child with hypo-unawareness – a life saving dog!).

My aim was to explore where my career would go, but I still leave that open. Open to chance meetings.  Open to networking. Open to fate perhaps, and certainly open to more day trips and conferences.

Please feel free to comment, and share!  I hope my post inspires others to attend conferences, and get meeting others in the field.


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Gluten Free on Prescription – our truth, our lives!

Background

OK so here’s the thing, at age 4, as you know my son was diagnosed with an autoimmune condition known as Type 1 diabetes. We were told it was life threatening with lifelong insulin replacement treatment the only option.  We were told no one knows why it happens, it was not our fault as parents and that it was unpreventable.

As a side note, we were warned that he may also develop Coeliac Disease – another autoimmune condition, genetically linked with Type 1 Diabetes.

You can google the rest I’m sure.  At age 8 – 4 years later, he starting loosing weight, passing blood and developed severe diarrhoea. The main symptoms that occur if someone with coeliac eats gluten. His small bowel biopsy was a terrifying ordeal to me, my husband had to go to work, my daughter to school and there I was, alone with my boy in Yorkhill children’s Hospital in Glasgow, with only the two of our frightened souls to make it through the night.

I had read that undiagnosed Coeliac disease can lead to bowel cancer. Processing that information, physically took the air out of my lungs and left me feeling like a ghost, with nothing but prayers and bargaining with god like never before.  After the biopsy, the surgeon visited us at his bed side and instructed us, sternly, to follow a strict gluten free diet straight away as there was much noticed bowel cell atrophy during surgery. Thankfully, my fears of cancer were quashed.  However, please let me further underline, my son has still not come to terms with having coeliac disease.  He can follow his insulin pump treatment, and test his blood sugars up to ten times daily, and count every carbohydrate to match his insulin requirements, and treat severe hypoglycaemia with my help (which could kill him) but he has not made peace with the fact that he is limited to what he can eat, where he can eat, and very frequently (now that he is almost a teen) cannot follow his friends to places of convenience.

PRESCRIPTIONS

Each month, on prescription, due to his age, we are allowed 15 units of Gluten free items. This is restricted to bread, pasta, flour mixes, pizza bases and crackers.  The bread counts for 8 units, the flour mixes 2 units.  So roughly, each month we order bread, 1 box of flour mix 500g – which makes about two batches of scones, or pancakes, the pasta counts for about two dinners also.  So there you go, he gets two dinners, two pizza bases and whatever bakery items I make.  On top of this, I buy other gluten free flour from Doves farm to supplement my cooking needs to feed him, and my family. I buy him cereal, I buy him biscuits and the rest of my shop goes on buying things to make from scratch. We don’t buy ready meals at £1. We can’t buy frozen pizza at a cost of £1 – all of the frozen gluten free pizza’s are more expensive also – averaging about £3.50.  If we eat out, which is rare, restaurants very frequently charge more for gluten free options.  Therefore, him having a disease, which was not his fault, does cost us! It keeps him safe from harm, but it costs us.

If he ate gluten:

So let me just reiterate this, he would be ill.  This is a disease.  It can cause bowel cancer.  Is the NHS not for people with illness now? Why have an NHS? Oops, did I let the cat out the bag there?  Is there long term plans for the NHS and it’s future? I think we would be naive as a nation to not know this.

In line with the Autoimmune nature of his disease, are other patients with other autoimmune conditions branded as using up NHS budgets?  Are headlines publishing how much their treatment is costing the NHS? What about patients with MS, or Rheumatoid Arthritis, or even Autoimmune Kidney disease, do these diseases make frontline news?  The recent media outcry has now insinuated that people with Coeliac Disease do not deserve cakes or donuts on prescription.

NEVER IN THE 4 YEARS SINCE MY SON’S DIAGNOSIS HAVE WE HAD CAKES, OR DONUTS!

These lies, have been published to alienate us, to provide society with misinformation, and build myths to create anger towards us. If he doesn’t follow a gluten free diet, he runs a higher risk of bowel cancer – will the NHS then accuse us of using resources for that, and just think, how much would his cancer treatment cost?

I often find that when the media brings out malicious and defamatory information, that I question where the lead has come from?  I ask this of my health minister in Scotland, Shona Robinson, and I ask for her support to highlight now to the media – as a means of retraction, that we are not enjoying cakes and donuts free on prescription.  Indeed, our counterparts in England, do not receive free prescriptions, and in some areas, clinical decisions mean that some people do not have the same formulary as other counties, and are struggling to get basic staple items on their prescription in the first place.

This move, by the Daily Mail and BBC Breakfast (showing an interview tease of cakes on 18 August 2015) is discriminatory.  Chief Executive of Coeliac UK, Sarah Sleet, supported the members by explaining the prescriptions are only for staple items, but with images of cakes being shown, this visual portrayal of lies, still builds widespread, societal ignorance and mythology.  However, Ms Sleet did point out that the figures published were not fact! Spending on Gluten free prescriptions, for staple items, comes to £26.8M not £116M as published – a slight change there then? this is shown also, in the letter by Coeliac UK’s Chief executing addressed to the Daily Mail!  Has the newspaper provided a retraction since then? Has there been a re-print? A public apology?

Meanwhile, my son is not obese, he does not live on cakes, he has a healthy diet – which allows him to have treats now and again like any other child, in fact, eating healthier that many of his peers who travel to take away shops for lunches everyday at school – of which he cannot eat because they all contain gluten.  He likes to attend his local skatepark, for leisure. He cannot eat the food there either, so I find myself being an outside caterer with small tubs of rice and chicken, or rice noodles with veg and meat, or perhaps I’ll make him a gluten free sandwich with chosen fillings. Nevertheless, he does not eat the pizza’s and hotdogs that all of his counterparts seem to enjoy everyday.

By following his diet, and eating well – isn’t he doing the right thing? I ask you, walk past children at a local softplay, a leisure centre, school on lunch breaks and have a look at what they are eating?  Notably, there will be some children who make healthy decisions, but the majority will not be. Children’s menu’s up and down the country are likely to include chicken nuggets (fried or coated in gluten), burgers (gluten in the bun, and the meat), chips (gluten in the chips or the oil),  oh and the delightful Mac & Cheese (yip, you guessed it – gluten in the pasta).  So, yes, I do take it as a personal attack that these media items have portrayed my son to be fat and stuffing cakes and donuts (on some imaginary prescription letter) down his throat!  Here are my children, on holiday.   Despite his love for the Nike store, I think you will agree there is no obesity pictured here. You may look and see they both look very healthy.  This is the problem with society today. We are a visual race.  We enjoy pictures, instagram, snapchat, twitter, flicker and everything else in between. Some disability is not seen.  But show pictures of cakes and donuts next to a headline – inflaming the nation with lies, and deorrgatory statements and suddenly you have my son’s healthy under scrutiny. He protects his health, because we realise he NEEDS to. How many of you, out there have the same self-protective attitude towards your health, in honesty? Can you say, you calculate carbs everyday, can you say you stick to a diet? He has had NO CHOICE from a very young age, and will need to for the rest of his days. Yes, I am defensive. The media have opened the gates, fed the nation a bunch of lies and I am outraged.

kidsinfrance

Also, the Telegraph, published an article which outrages many, including myself with a direct quote from a “spokesman” from the Department for Health – who is this “spokesman”?  apparently, he thinks the NHS was founded to prescribe cakes and biscuits.  Had this spokesman done research, he would find, that we have never had such items prescribed. however, a small apology has been mentioned on their website for getting their figures wrong! Did you notice I said small?Small font size, in italics, on the bottom of an article, as a footnote.

One point, I wish to highlight is the price and nutritional content of gluten free food. Stop by your local supermarket aisle today, check out the extortionate prices of the cereals, the biscuits, the snacks, cakes in the gluten free section, and have a look at the amount of fat and sugar that has been added.  We were told, by an NHS dietitian, that yes unfortunately they take out gluten – but then they add more fat or sugar – or both!  So whilst we are told to protect his insides from gluten, we now have to make a decision based on how much fat or sugar he eats too.

I spend more hours in the kitchen baking,and preparing healthy homemade meals (because ready meals mostly all contain gluten), I send him to school with a packed lunch – carefully carb counted and nutritionally balanced, and all to save his small bowel from destruction from antibodies, and the risk of small bowel cancer.  Should I have to defend this?  Seems so, when the media want to single us out. How dare ill people, with genuine disease, use up NHS money!  Watch out folks, if you have an autoimmune condition, the media could be onto you next.

I’d love to finish on a positive note. I really would. However,  I woke up this morning, trying to avoid the media like a hermit.  I done some yoga, made breakfast for my family, made packed lunches for everyone, and put on the radio.  Only to hear on the news that E-cigarettes may now be available on prescription!  Isn’t smoking a personal choice?  Sorry, isn’t it a person’s choice to smoke?  Not sure where in my son’s little life did he CHOSE TO HAVE TWO AUTOIMMUNE CONDITIONS WHICH COULD KILL HIM. We wouldn’t need prescritions if he wasn’t ill.

As a small side note, there have many nods in the direction of the increases in prevalence of diagnosis of coeliac disease and perhaps the amount of pesticide sprayed on crops, and GM crops.  Just saying, as a side note, and in small font size, and italics!