Wednesday 27 April 2016

JDRF #Type1catalyst at Parliament

Two years ago I attended Parliament with JDRF for the #countmein campaign. During this event we lobbied with MP's raising awareness and spreading our stories about living with Type 1 Diabetes. At Type 1 Parliament we were trying to back government funding towards Type 1 and I was privileged enough to have a private interview with Ed Miliband who was very nice and really interested in what I had to say about Type 1. I even found out that Ed's uncle helped design the first insulin pump! 

On Monday I attended Parliament with JDRF again, but this time the event was called #Type1catalyst and was different to the event two years prior. Joined by health care professionals, MP's and their Type 1 constituents, and of course the lovely team from JDRF, Type 1 Catalyst was in full flow. Jamie Reed MP, lead the event giving a fantastic speak and we were also joined by Derek Rapp, who is the CEO of JDRF US and it was very nice to meet him along with Jonathan Valabhji, National Clinical Director for Obesity and Diabetes at NHS England who attended the event. Theresa May, Home Secretary popped in to help us celebrate the event and it was lovely to meet Chris Askew, Chief executive of Diabetes UK. It was  fantastic to able to meet some of the Type 1 community from Twitter, as well as many JDRF staff who Id been in contact with over twitter and emails such as Callum, Chris, Dean and George, finally having a conversation face to face! 

The Type 1 Catalyst event allowed us as people that lived with Type 1 and our MPs to hear about, and help us celebrate the successes of research towards potential cures and treatments for Type 1. The CEO of JDRF, Karen Addington said that these ideas are no longer ideas, and seeing how far even in the past two years research is progressing at Type 1 Catalyst it shows extremely exciting prospects for the future! One of the researchers who attended the event in Parliament who I was able to speak with was Mark Peakman, who is a Professor of Clinical Immunology at Kings College. Mark is working constantly behind the scenes figuring out how to stop the body attacking the beta cells which produce insulin and has found that you are less at risk of complications if your body still produces C - Peptide. 

Overall the event was fantastic being able to see the excitement and support behind Type 1 Diabetes! As a Catalyst speeds up processes it is brilliant to see the fast paced changes and improvements within the world of Type 1 Diabetes! As Jamie Reed stated 'We have to keep rattling the bars!' Change is happening but we have to keep pushing for change. We need to keep being the catalyst, but with all the fantastic support from the government and JDRF - Im positive that Type 1 Diabetes will will become Type 0. 

Lots of love The Backpacker and the Pod xxx











Wednesday 20 April 2016

#Iwishpeopleknewthatdiabetes - type1

My A Level art mood board about Type 1. Including pictures of only diabetic friends, old omnipod insulin pods and my favourite inspirational quotes








Once upon a time a 12 year old girl was diagnosed with type 1 diabetes. Nearly 7 years on there is a few things I wish people knew...



#Iwishpeopleknewthatdiabetes 

  • Is 24/7 - there are no days off (not even Christmas!)
  • T1D affects around 400,000 people in the UK
  • Is a roller coaster of emotions and blood sugar readings
  • but somehow we keep positive - most of the time!
  • as no two days are the same and it can be frustrating
  • no we didn't get it from eating too much sugar
  • there are two main types of diabetes
  • is nothing to do with lack of exercise
  • …or poor diet
  • and does not always come from elderly people
  • and diabetics don't want to hear how a distant relative have their foot chopped off
  • we have to carry around life saving equipment every every da




















#Iwishpeopleknewthatdiabetes
  • is not a death sentence if managed
  • but it nearly killed my best friend so it is very downplayed in seriousness 
  • and sometimes there is no explanation why
  • it is emotionally hard to deal with
  • and there is no such thing as a perfect diabetic
  • it causes 40% of diabetics to have an eating disorder
  • and burnout is common - it needs to be talked about
  • and its OK to ask for help
  • even though we aren't alone sometimes we feel it
  • if we have a low blood sugar it is not because we did something wrong and we DO have to have sugar to bring our bloods back up
  • it is not cured by cinnamon or other herbal diets - not even by a low carb diet
  • it makes any common illness you get ten times worse
  • but makes us 10 times stronger
  • has given me the best friends 
  • has allowed me to be part of an amazing community
  • … who feel like my family - some of whom i haven't even met yet


















#Iwishpeopleknewthatdiabetes
  • if seen in a positive light has allows you to conquer and do some amazing things
  • but has led to struggles during exams and stressful times
  • but at the same time we forget everyone struggles 
  • its a hard job - theres no sugar coating it
  • and we SHOULD NOT be defined by our Hba1c
  • it affects the whole family not just the sufferer
  • and although we may not always say it were so thankful

























#Iwishpeopleknewthatdiabetes
  • my insulin pump doesn't magically ‘do’ my diabetes for me - its not a pancreas!
  • and some devices we have to pay for… 
  • we have to calculate all carbs in our head
  • … but we don't get a maths degree (boo)
  • we can eat ANYTHING (in proportion obvs) as long as we inject for it
  • diabetes doesn't stop me from doing anything… i just need to be more prepared (good job i used to be a girlguide and scout!)
  • and it DEFINITELY does not define me
  • but to those who feel defined by it at the moment - one of my nurses called Sarah from my old team in Doncaster once told me ‘Life always has its ups and downs. Sometimes it feels like your entering a black tunnel with no light is sight - but you will come out the other side’ - that stuck with me and I hope it will stick we you too - keep going x

Finally…

#Iwishpeopleknewthatdiabetes - makes me part superhuman (well thats what I used to tell the Beaver Scouts anyway ;) 




Lots of love The Backpacker and the Pod xxx

Monday 11 April 2016

#TADtalks2016

Partha I've just being paid! Do you have any spaces left for TAD?! I'd heard a lot about TAD (talking about diabetes conference) from Twitter and this was the first year it was running. I really wanted to go so as soon as I was paid (and Partha kindly found me a space) I booked my tickets to London!

I didn't really know what to expect but I knew some fantastic speakers were there, one of whom I had already met a couple of weeks before called Lis who had lived with Type 1 for over 50 years and another Ninjabetic - who somehow we always end up discussing at my clinic appointments! 

On the way down to London, like a loner I might add, I was sat on a table of four on the train, with three older women who all knew each other. With my headphones in watching Miranda on my phone, I pricked my finger and tested my sugars. Around me on the table I could hear 'that young girl has diabetes - how much sugar do you have to eat as a kid to get that so young - disgusting.’ DISGUSTING?! I was very tempted to take out my earphones and give them a full lecture (including lecture notes) on the difference between the two main types diabetes but not wanting to make the train ride awkward and being very hangry from not having time for breakfast I drowned them out with the sound of Miranda - such fun.

After arriving in London and catching the tube to South Kensington I arrived at the conference hall in Imperial College London. It was so lovely to meet everyone again from the PWDC16 a couple of weeks before, my friend Abi who I met volunteering on a Diabetes Uk camp last summer and new faces who I've seen on the #gbdoc twitter sphere. 



The day started off hearing from Justin Webb from BBC Radio 4 who introduced the event and told us about his son and how his son had type 1. It was interesting to hear diabetes from a parents perspective as many of the talks I attend are always the HCP's views or the views from the person who actually has diabetes. 

There were many fantastic speakers throughout the day who are truly inspiring to the world of diabetes. We heard heartbreaking and inspirational stories, one of which has stuck in my head from Weston (#wearenotwaiting) who lead an moving talk on Nightscout and his reason behind it. We also heard from many other amazing speakers such as Anne Coops who spoke about resilience and how diabetes treatments have changed over the years. In true diabetic style when Annes pump started alarming she whipped it out from her bra - something that every diabetic has done but hilarious to see first hand during a talk - good job we were all diabetics who understood! :P ahaha!

The first speaker of the day was Joe Eldridge. It was amazing to here his story about cycling with Novo Nordisk and how competition didn't just bring out the best in him, but also the best in his diabetes. The competitive streak helped Joe to get to the next level and this came about when he had only £8 left in his bank account, after constantly having to buy burritos for his team mate, after loosing the bet of having the best blood sugars - so he knew he had to win the bet. On the way to the burrito place he checked his blood sugars 4 times to make sure they were in range and after that day the burrito bet was off. I absolutely loved this as I find that competition is something that motivates me with my diabetes and therefore I could relate to Joes story a lot. It is also inspiring how the cyclists from Novo Nordisk can control their diabetes even with the factors of adrenaline and how that raises blood sugars along with everything else that diabetes may throw at them during an 100 mile race. I've found my diabetes inspiration - I struggle a lot with my diabetes and sport but Joe has proved to me that nothing can stop you if you’re really passionate. 

All this talk about diabetes and the burrito bet made me want to check my sugars to see if they were in range. Again I pricked my finger and a whole fountain of blood poured over the table leaving it looking like a crime scene - lucky I was in a room full of people who I'm sure this has happened too as well! 

Ooh 5.6 #wheresmyburrito

Next up was Lis and I was very excited to hear about her life with Type 1 as she has never given speeches about it before. Firstly Lis talked about the Palmer injection which looked awful! A massive metal contraption to inject the insulin. Lis said it hurt no more than a cannula but the look of it was like something out a horror movie! When Lis was first diagnosed she had to over eat to be able to accurately count for carbohydrates! Now we know, years later that this can lead to dangerous thought processes and as we learnt from the DPC16 that 40% of diabetics actually develop an eating disorder. 
Lis also spoke about her experience with her diabetes over the years ‘Volunteer, go change it, do something about it’ and the diabetes community as ‘One thing that transformed my life was talking to others’ this just shows as a community how powerful we are! Lis also spoke about sugar surfing and taking her diabetes management into her own hands through the use of technology. ‘Getting a CGM was like turning a light on and id realised id been waling around in the dark’. 


Laura (ninjabetic) spoke about her misdiagnosis, something that many people in the room could relate too, and how the first 10 years of her diabetes was challenging due to not having the proper help and teaching at her diagnosis due to being diagnosed in Disneyland Paris and having all of her basic training in French. Lauras story inspired me. As a teenager with Type 1 I could relate to the feelings of frustration and wanting to not be diabetic from time to time - people who don't have diabetes done quiet understand the strain. After 10 years Laura met Partha and found blogging and social media to be such a massive positive influence towards her diabetes and is now (i would say) THE most successful diabetes advocate out there. 

‘It was nice not to be high all the time - its nice to be able to say that in a room full of people that understand’

One of the most poignant moments of the day was a little girls response to Richards Lane, a past president for Diabetes UK and their first Ambassador, who gave a fantastic speech about his Islet Cell transplant. ‘What was it like being off insulin?’ she asked and I don't think there was a dry eye in the lecture theatre. Heartbreaking.

It was also lovely to have a member of Parliament Jamie Reed speak about the experience of his sons Type 1 and of course his own. Jamie Reed is also hosting Type 1 Parliament this upcoming month and I look forward to meeting him again to try and raise more awareness for the condition.

Overall #TADtalk2016 was an amazing idea from Partha Kar Diabetes Consultant at Portsmouth Hospital, Catherine Peters from GOSH and there was Peter Hindmarsh from UCL. Id like to say a big thank you to all of the amazing speakers as well as it was a fantastic day and I can wait for next year! … and possibility #TADpoles ;)





Lots of love The Backpacker and the Pod xxx