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

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


5 Comments

It’s the final countdown

Did you sing it? …Air guitar!

Tonight, I wanted to jot down some feelings about my final exam coming up, as part of my BSc (Hons) Biomedical Science degree at the wonderful University of the West of Scotland in Paisley. Has anyone ever felt the impending crisis of confidence that comes with this finality? tripping up at the last post? falling at the last hurdle ? and all other steeplechase adages. Can I say? This is partly me. The other part of me wants to be the person who tries their hardest right til the end, like “when the going gets tough..” You may be thinking enough of the proverbs, if so, I don’t blame you.

It’s the pressure I’m under you see. Right at the end of this degree I have the whole plethora of reasons which I’ve built up over the years ,to keep on going. The memories of the stresses and strains it has put on me and my family. The lack of sleep due to many reasons and the blind faith that I would keep pushing myself to get there.  I’m almost at “There” now, or am I?

As a part-time student, I have met so many wonderful people who have inspired me. I’ve met a lot of friends who share my passion for being a science girl/nerd/geek/weirdo/guru. On the whole,  I can use the word “privileged” for how I feel about this change. Anyone, who undergoes a career change may feel trepidation at the prospect, but I can confirm the change has been good for me – so go for it! If it’s something you need to do in life, I hope you get the chance to.

Biomedical Science and this career change is always a moving target. One which never really came into focus before now. You see it’s not until the end of honours year that you start to really take things seriously, how could you before? you didn’t know you would get this far, right?  I mainly speak for myself here.

PEANUTS!

You begin to meet people, who you may actually be involved with throughout your career.  For example, recently, we’ve had the pleasure of hearing how it is in industry with a series of talks from scientists working in labs in Scotland.  They have discussed the focus of their specialisms in laboratory diagnostics or research – highlighting the impact they have on lives at the other end, perhaps vulnerable and waiting on results.  Their responsibilities at hand of keeping systems in flow, and performing accurately to meet demands of ongoing developments and tests in Biomedical science.  A recent lecture from a clinical immunologist on the range of allergy testing that can be carried out nowadays inspired me.  One talk discussed the ways of testing for allergies including skin prick tests, measuring wheals as they responded to localised allergens under the skin, and also the movement towards molecular genetics such as the awareness of the ‘Ara’ gene’s in peanuts and their related allergens that can be detected with antibody testing. It almost ranked #1 in lectures, however this spot is reserved for Dr Anne Crilly’s lecture on autoimmunity. Dr Crilly was my research project supervisor, so I do have vested interest in being a fan!  I feel inspired by great minds who tackle very complex scientific challenges to improve people’s lives, and I hope student’s voice their appreciation of this which I know a few of my peers do.

Clinical immunology is where I aim to be involved, but as I learn about the scientific community and the specialisms out there, I realise, if I achieve my BSc (Hons) that I’ll be a beginner again and rightly so. For this reason, saying that  I’m almost “There” now seems a very sinuous comment to make in this industry.

Diabetes Research

In the days gone by, whence I was young and naive (not really, I was 32 when I started this degree) I thought I would qualify and go straight into diabetes research. As a mother of a child with type 1 diabetes, I was sure this was all the gumption I needed. <insert evil laugh here>.

I know differently now. Those little acronyms, of which I have learned so many, are now staring me brightly between the eyes most days. PhD being the one of most illumination. However, as mentioned (quite a few times now) on this blog, I do have a family. I do have growing teenage troops and they do need parenting as much as little babies do.  Side note: If you have teens, you will know what I mean.

Inevitably, I will try to make a confident decision and move forward with my career, but I wouldn’t have been in this position if it wasn’t for my quest to find out why my son was diagnosed with autoimmune conditions. Each time things got difficult I told myself “if someone else can do it, I can too”.  This quote is dedicated to my children.

2015-03-02 14.48.58

John, my snowboarding genius!

2014-12-30 10.56.04

Katie, my young aspiring musician, and teacher!

To Katie & John:

If you read this (meaning you may have to actually use your mobile phones, and now my argument for this seems ineffective) – Thank you for putting up with me, and having faith in me so far. In this day, when you live with your mobile phones joined to your hands and google anything you want to know, I want to highlight that being part of studying for a degree is great but you’re in it for the long haul and you have to be patient with yourself.  Good things come to those who wait.

 


Leave a comment

SansGluten? Mais oui!

2015-06-21 13.01.14-1Sorry for the lack of updates folks, we’ve been in the Cote! This is what locals call it, and since we were there for two weeks, I’m now considering myself as one.

Coeliac disease and trips to France bring about a whole new level of event management.  If you have travelled there, you will now where I’m coming from.  I thought I had the pronunciation of “Mon Fils avais un maladie de coeliaque”  – until I realised I’ve probably just said he had a disease, rather than he has!  And this sums up my failings in French. I can pick out verbs and nouns from my previous school years (ahem, a few years ago now), but stringing it all together into perfect tenses, and participles is another matter.  So I’ll stick to biomedical science now.

Without making too much light of this, it was extremely difficult to eat there, unaware if we were being paid “lip-service” by chef’s and waiters, and waiting to see if our son reacted in anyway to possible hidden traces of gluten.

I had browsed many blogs and websites before travelling to Nice and Cannes, and many results failed at the first hurdle.  Still, I wanted to try and take on a challenge with my son, to help him see there are ways and means.

These include, researching where the nearest supermarkets were – and if they stocked gluten free (sans gluten), booking self catering accommodation in order to make as many of our own meals as we could. Packing as much gluten free food as we could, and learning basics french.  But to give you an idea of the impact of Coeliac disease, here’s a little story that you might find interesting.  When first diagnosed, and for quite a while afterwards, my son was literally frightened to touch any surface that may have come into contact with gluten.  At age 8, and having had severe pain and weight loss, nevermind the experience of having a biopsy, he tried to cope with his fears by avoiding lots of places. Including opening car doors, which others had touched – because they had just ate a sandwich!  There are other occasions that I won’t mention, but it took us a lot of hard work to encourage him that he would not experience pain unless he ate gluten.  Fast forward a few years, a school trip on a residential break (I went with as a volunteer), he panicked when his class mates started throwing toast around at breakfast time, resulting in crumbs all over his food and his freshly squeezed orange juice! Staff, and teachers showed nothing but disdain for my son’s panic, and exclaimed that he was making a fuss about nothing! (super-hero mummy to rescue with that one – and I got no medal for being the most diplomatic person in the room). Being that he also has type 1 diabetes, it is quite important for him to gain substantial long lasting carbs at times where we are planning long hours of exercise, so we like to ensure he has adequate nutrition. Wait!  But doesn’t every child? My point exactly.  The amount of times he has felt excluded from society because of Coeliac disease is countless, so we try to make the good times happen as frequently as possible (note to self, next blog to discuss failing to maintain a healthy bank balance every month).  He is maturing, at quite a fast pace it has to be said, but with a sad understanding that there may be many occasions where he just can’t eat.  Friends tottering off to Subway for example, friends birthday parties (will he take a packed lunch now that’s he nearly 13?) and holidays to France?  But here’s the secret gem I was hiding, deep within my blog (mysterieux, non?).  Choopy’s.  Yes.  Choopy’s is in Antibes. It is cupcake heaven for us avec coeliaques. 

gluten free cupcakes, in Antibes

gluten free cupcakes, in Antibes

It’s a local cafe, ran and managed by a french lady who has coeliac.  The kitchen is 100% sans gluten, the cupcakes, cakes, sandwiches, bagels, baguettes, wraps, smoothies are all healthy gluten free alternatives.  I don’t care if this is blatant marketing, I get no fee for this.  The place is wonderful.  C’est delicieux! When we arrived there were lots of tourists there, and with a huge map on the wall with pins  – we got to see where people have travelled from to visit.  My son felt a range of emotions, all of which I see in his eyes without him speaking a word. Relief, joy, happiness, relaxation and delight.  2015-06-27 14.52.092015-06-21 20.45.01

Secondly, there was a creperie in Nice (Debin Ur Begad), in the old town which offered gluten free crepes.  Thankfully! You have no idea, just how many restaurants we had to avoid, so to find two which we could visit, and feel safe seemed like heaven to be honest!

Just take a moment to think of all the places you can eat, in your local town, if you are out and about and feel hungry – where do you go? Do you buy a quick sandwich (is there a gluten free option there?)  Do you head for Greggs the bakers (Do they offer anything for people living with Coeliac? – apart from a piece of fruit?)  What about Marks & Spencers?  Do you see how many sandwiches they offer – oops, wait, you’re right there is that one option which is gluten free isn’t there.  That’ll be the egg option! You guessed it, my son doesn’t like egg sandwiches. Actually, I don’t know who does?  (that one is open for discussion if you are really bored today).

You’ll quickly realise, just how much food matters to your life when it suddenly becomes restrictive – and more so for a child.  The social impact is huge and one which society doesn’t need to think about, until it comes across it.  However, things are improving, all the time – just yesterday I read of research at the University of Alberta, where a study is underway to prevent gliadin from causing gut damage. Not sure what the coeliac community feel about this option, if they feel delayed gut damage would still occur, however at least research is trying to help us all! Discuss??  Coeliac Uk have an annual research conference, which you can read about here also, if you feel you would like more details on current research topics. 

We do feel perturbed when we read how amazing Italy is for gluten free food, and the search will continue for the next holiday. However, since it was so expensive in La Sud de France, that won’t be happening this millennium.


Studying Biomedical Science: Relate, Relativity and Relationships!

me ace

This is a “broad spectrum” post today. It so happens that being a science student, we often ask the questions “why?” quite often.  As you may know from previous posts, my intense curiosity is driven by our patient experiences as a family of a child with Type 1 Diabetes.  However, recently I tried to imagine if my life would have been slightly simpler and less stressful had I not embarked on this career change.  What would I have done instead though?

I was travelling to and from my son’s school 3 times daily to administer insulin injections, I was learning about recombinant DNA techniques, I was calculating doses and trying to get blood glucose readings (of a growing child) to come between two very small goal posts – (4-7mmols to be precise). I started my blog to show people the reality of living with Type 1 Diabetes (and Coeliac disease) from my perspective, a mother’s perspective. Also to develop the relativity of Biomedical Science and the research with these conditions; to explain how my life changed by forming an understanding relationship between the two.

At times, embarking on this career has left me feeling absolutely exhausted – mentally and physically.  Learning complex, scientific material whilst holding onto enough perspective to remain a wonderfully, energetic and resourceful mother, wife and carer into the bargain, although my family would disagree on some of those issues.  However, along the way I’ve had serene light bulb moments. I realise this does sound a tad prosaic. But these moments have been pivotal to my continuation as a science student.  I’ve listed them below to break up the format more than anything:

In the style of John Cusack and Jack Black in the film High Fidelity – here are my Top 5 best ‘science’ moments (feel free to add your own playlist):

1 Visiting the Centre for Life / Science museum in Newcastle when the kids were little with them pointing to the University of Newcastle building and asking me ” mum, will they find a cure for Type 1 Diabetes?” I Remember feeling incredibly small that day – faced with nothing but huge mountains to climb in terms of learning.newcastle life

2 Reading the story of Dorothy Hodgkin and feeling positive that great women have been involved in Biomedical research for decades.  Her involvement in discovering the structure of insulin brings me nothing but awe inspired admiration.

3 Reading about Dr Melton and his team discovering an amazing medical breakthrough in terms of diabetes research – producing human insulin beta cells from stem cells at Harvard.

4 My family, their continued belief in me that I can pass my honours year (no weeping allowed here folks) although I don’t necessarily believe in myself until I see the grades along the way – so far it’s been averaging B1.  Although, I have suddenly started to feel a drive to raise that to an A!

5 I honestly feel that I can relate to others who have faced adversity, mortality issues and continue with courage, and at times, research can build this quality (said with a tinge of facetiousness). Understanding, on the whole, that you cannot control the results, you just have to roll with what you get! It mirrors the stage of acceptance I have with my son’s diagnosis.

My thoughts for the day – For anyone struggling through a tough year at uni, studying Biomedical Science my message is yes, I have had huge doubts of my ability along the way, and relations have been strained, but the good news is folks, I’m still here.  I have persevered in times of strain and despondency, pulled up my boots, and trundled on. I have also experienced times of elation (logging into online blackboard and seeing a higher grade than expected). As a Part-time student, several years on, I am still continuing with my degree – on top of extreme tiredness from testing blood sugars at 12am, and 3am.  The latter resulting in a wonderfully tight HbA1c of 6.9% for a pubescent boy, who is travelling on a difficult journey at times and needs a loving, guiding hand, so it’s all worth it.

The reason why I am persevering is, I care passionately about helping people; I care passionately about scientific research, and it’s place in society. I see my son not having the choice BUT to persevere – even on days whIMG_0178en his fingers hurt from the continued blood finger prick tests, or when he has a painful cannula insertion, or when he just feels that it is all too much to face.

To have the privilege of health to be able to study this and put this knowledge to use one day is something to feel greatly proud of.  I hope my message keeps you feeling motivated through your studies and you rise above the challenges along the way. We CAN do this folks!

I should finish with a cliffhanger – and this would be my number 6 on the list if it were allowed :

if anyone out there has or lives with someone who has Type 1 Diabetes, have you seen the news about the new Medtronic 640g pump? with low suspend technology? coming to the UK now :

Take care folks and if you know someone that needs help with dealing with Diabetes then please take advantage of the wonderful service offered by Diabetes Uk to talk to someone.


Leave a comment

Job Hunting!

These past two weeks I have been mostly job hunting! I decided after my summer work placement that I enjoyed learning new lab tecnhiques and skills and the time felt right to take myself out of University and honours year (now that I have my Bsc in Applied Bioscience) to concentrate on learning in industry. Sub note: I might go back and do postgraduate study at a later stage, but for now, I want to start applying my knowledge and gain more hands-on scientific experience.
IMG_1208

To get down to the nitty-gritty, I feel that sometimes the university labs can be overcrowded and with such short time slots for classes, the chance to even get touching some equipment or a quick glance through the crowds (there are 84 in my class) is at times, frustrating. Nevertheless, I did learn quite quickly to push my way through (previous years experience at Glasgow Barrowlands comes in handy) and make sure I asked questions on what was actually happening – most of the time! For example, a recent PCR assay meant a trip upstairs to the analytical labs, where the software and plate reader were installed. The whole class, trampled and squashed in this lab almost felt like some strange Edinburgh Festival street show, with a small clearing in the middle where the lecturer tried his best to explain threshold and Ct counts whilst pointing at some very distant graphs. My summer placement was crowd free and access to all lab equipment meant I could apply my knowledge without haste – giving me some time to take account of all the gaps in my knowledge and how best I could transfer my skills in employment.

So I’ve updated my LinkedIn profile, polished my CV and read through quite a few interesting posts about career change and being a “mature” student – all of which have affirmed my belief that getting myself out there is the best move at the moment – before I get even more “mature”.

Then there’s the vast sea of laboratory positions to siphon through each day – each with differing defitions of the term “laboratory technician”, “research assistant” or “medical laboratory assistant”… some posts require only an HND and yet others (with the same job title) look for PhD/Masters qualificatons. It’s all very similar to the fact that the scientific community have several terms leading to the same meaning. I once heard a senior Biomedical Scientist describe this phenomenon as intimidation. I prefer to look upon the whole thing as being a tad quirky and geeky – it keeps my sense of humour from abandoning me during such a period of life changing decison making!

Wish me good luck in the job hunt, hopefully I will get closer to my dream of being involved with Type 1 Diabetes research. You never know, one day we could be working together?


Leave a comment

IBMS, CPC, HCPC, Portfolio, Hons – how many more abbrev. Can my blog take?

JohnMilport-1Diddle Diddle dumpling, my son John!

Hi everyone, I’m currently on a work placement over the summer working with IBHER (Institute of Biomedical Health and Environmental Research) within University of the West of Scotland laboratories.  This entails me volunteering basically, to gain much needed experience.  For which I am very grateful, mainly because every job I see advertised states “2 years post qualification experience”. Have you seen this?  I understand completely as a mature student, and one whom has taken a career change, that you simply cannot allow a new graduate to enter labs and start playing ‘The scientist’, but within my degree there was limited accessibility to placements.  Hence, when the sun is shining, and you kids are all playing with hoses and paddling pools whilst I am in the labs!  Violins please – at the ready.

I write this blog with some dismay also, because as you may know, I wanted to study Biomedical Science to allow me to gain access to labs involved with Diabetes Research – possibly to gain a job as a research assitant/technician.  However, my summer placement involves working with murine and human models of OA (osteoarthritis) and characterisation of the cellular infiltates in synovium.  This involves IHC techniques, and microtomy.  Both of which, I am enjoying learning but I still have my heart and passion set on Diabetes research. Does this sound petulant?  I hope not, because I sincerely am grateful for this opportunity but I just fear it may create some unwanted distance from my goals.  In one hand, we are encouraged to think of our goals – or aspirations, but on the otherhand we need to balance reality and what fits in with our own personal circumstances.  The balance which we all live with in society.

Also, sometimes I have doubts about completing honours year due to the continued need for post qualification certification and the fact that nowhere has the time to allow this to happen in the NHS at the moment.  I know of two friends who studied Bsc Hons in Biomedical Science and now work as Band 3 lab assistants – a job which is advertised as “no formal qualifications are necessary”.  So, what to do? honours year or not? that is the debate.  Meanwhile, my family are enjoying summer on our limited budget – and beans are a staple diet right? HashtagNotInItForTheMoney

On a more personal note, I have been volunteering as team leader for Diabetes Uk Big Collection Weekend again and helped to raise over £12M for the charity with all the wonderful volunteers up and down the country in Tesco stores.  I am forever grateful to my friends for giving up their time to come and help my team, and I promise to continue my support for both JDRF and Diabetes Uk no matter what.   John and some friends managed to show the Tesco staff their Insulin pumps, and got some amazing support from members of the public who were not aware of how serious Type 1 diabetes actually is to live with.

IMG_3088


Leave a comment

BSc – I am that!

autoimmune

Today, a letter of award arrived.  I have successfully passed third year and been awarded my BSc in Applied Bioscience at UWS, Paisley campus.  I am not currently jumping up and down, or cracking open the bottle of cheap wine.  I am trepidly awaiting honours year now.  I still need to complete that to be qualified with my BSc in Biomedical Science (hons).  So, it’s a minor “yaay” for today, but still a “yaay” nonetheless!

I’ve been homeschooling my son since easter holidays, and I possibly feel slightly drained, so it’s all quietly appreciated for now.  In regards to my son’s autoimmune conditions and the diagnosis, and the pain and upset; the shock and the steep learning curve, I say thank you! I now have a degree. It pushed my determination to understand it all a little more.  I am aware that this drive exsists in many who get involved in medicine and research, and have already met a few lovely Dr’s and Professors who all share enthusiasm for area’s of specialisms dear to their own hearts.

To be a teacher? That’s a whole new debate!  Trouble was, the school never adhered to his care plan. Subsequently, he was left walking around a school whilst experiencing his third severe hypoglycaemic episode of the day with no named person there to look after him.  This led to my decision to complain to the local authority, having already had the deputy head teacher scream and bawl about how my son was not independent or confident, before hanging up the phone on me.  I was left with two choices, either send him to another school for 7 weeks of the remaining primary education, or homeschool.  I chose the latter.  The trouble with accusing a child of 11 years old, whilst he is hypo, that he is neither confident or independent is that it is actually classed as bullying and I was willing to write a formal complaint, and go the full way – but was told by the Local authority that this procedure would take 6-7weeks – by which time he would have left said school.

So we took the positive route out, let it all go and enjoyed ourselves learning new things and visiting some very insipring places including RSPB Lochwinnoch, Glasgow Science centre, Cycling around Millport (or Little Cumbrae if you want the Sunday name), various parks and beaches.

Since our debacle with the school, there has been a new document put in place I believe, by the Scottish Government and Diabetes Scotland (Diabetes Uk, Scotland branch).  The document will hopefully allow more support to parents like myself when things go badly wrong in education, and they do for many.  There has been campaign’s highlighting how some schools get it right, but like everything, not much emphasis on when things go the other way!

 

pump

 

I think he found the whole experience strange, but welcoming after the trauma.  After many a discussion about various, non-PC teachers I had come across in the early 80’s, he decided I was cool for taking on such a challenge and for the most part, he didn’t laugh at me when I got a couple of maths questions wrong. What?

I must admit, he did start to roll his eyes when I got over enthusiastic teaching him about DNA in Glasgow’s Science centre. I also deeply embarrassed him when I leapt with excitement at the sight of a Medtronic Insulin Pump on display, alongside the handsome Lenny the Lion.  Let’s just say, he’ll enjoy starting secondary school in August now and hopefully he won’t meet any teachers as mad as I was!

pump and lenny


2 Comments

Mentoring, Support and Guidance

ImageRecently, I have been lucky enough to take part in a wonderful scheme through my University, to attend a mentoring programme with a commercial organisation.  That organisation happens to be a global world leader in servicing the scientific industries, known as ThermoFisher Scientific. As an undergraduate with university laboratory experience, and limited awareness of where these skills would be transferable, the experience has so far enlightened me and gave me confidence that I can develop and build on my strengths.  I felt wonderment approaching the company, and discussing my future plans during mock interviews.  My CV has had some restructuring and now looks very polished.  My attitude towards my “soft skills” has changed from – “who wants a mother who has been a carer for the past 7 years?” to “Well, I’m an immaculately organised individual who has taken some major life challenges on board and learned to succeed under great pressure”.  What can I say? There’s a new shiny me on the horizon and I am truly excited about my future now.  A different story a few years back with a very young baby whose life was hanging on the balance.

However, I want to say more about the mentoring. I want to convey that the experience has not only been uplifting, confidence building and enriching for me – it has also shown me that everyone out there, in the industry has a story to tell. That my story may be poignant and inspiring, but there are so many others out there living a similar life.  People creating life-changing scientific breakthroughs, the people behind them supporting them and believing in their goal, the technologists building the tools, the driven Marketing and sales teams reaching out to meet scientific companies core values and needs. The wide expanse of life technology in Scotland alone, and the possibilities for graduates to get involved is out there and it’s a great impetus to get to know yourself better. 

I have doubted myself along the way, several times, with pressures of workload and learning topics that had me mimicking Stan Laurel from the wonderful ‘Laurel and Hardy’ movies (genius if you ask me!). But somehow, I keep on persevering because the fact of the matter is, it still annoys me greatly that no one truly understands why Type 1 Diabetes occurs or how to prevent it.  I read somewhere once, that the answers are all “out there” (wherever that is?) and it is up to us to find them.  I like this motto!

One major challenge I have facing me, that frightens me at the moment, is my son’s transition to Secondary school! Him taking on more responsibilities and managing that fine balance –  when we are talking about a drug that keeps him alive everyday, but could also pose a life threatening risk to him at the same time! It would amazing if Medtronic or Novo Nordisk could inspire the Scottish Government to employ Diabetes trained specialist nurses in Schools these days, but as most school nurses are peripatetic that dream may be a far off fantasy! I know that Diabetes Uk has a current campaign to improve care for children in schools in England, but not sure what polans are under way for children in Scotland. http://www.diabetes.org.uk/Get_involved/Campaigning/Our-campaigns/Type-1-diabetes-Make-the-grade/.  Also JDRF have a major parliamentary campaign launched recently to help ministers realise why research is so important and more funding is needed, http://www.jdrf.org.uk/campaigns/countmein, but at ground level many mistakes are still affecting my son’s healthcare and support at school and this is the key factor in all of the decisions I base my life plans around.  At the end of the day, I am his mother, his carer and his needs will always come first. 

It is with all this in mind I have decided that my Honours year at University will need to be put on hold at the moment.  It has not been an easy decision to make, but I feel that my University would prefer students in Biomedical Science who take on honours, to do so as full-time students.  Which I cannot fulfil.  It has taken me 7 years as a part-time student to get this far, and I think that shows I’m dedicated, but as I say, it’s all about the balance. 

If you are interested in becoming a part-time student please contact the Lifelong learning academy at UWS for further information.