Tuesday, 2 November 2010

"We don't live to be 'diabetic', we live to dance on the beach."

Here are a few more photos from this past weekend at Friends for Life:

This is one of my favourite photos from the weekend. E and I comparing pumps! Well...we have the same pump. E is 3 and is one of the cutest kids I have ever met. Whilst it was great fun having our photo taken together, a part of me felt sad that another child's life was affected by d, and how I wished I could take it away from all the children there.




So, a few comments about the event and the experiences we had there. The lady who was running the Medtronic stand on Friday evening I found to be very rude - I walked over holding some Animas leaflets and she questioned me, "why are you reading Animas literature? Stick with Medtronic" - I realise she is essentially a saleswoman but hello, I'm the consumer and you've really just put me off speaking to you!

On the other hand I found the Animas reps incredibly friendly and open. They gave both Tom and I free One Touch machines to try and to review (review will be in a couple of weeks when I have had chance to play around with it!). They also gave us 2 of their 'comfort' infusion sets each to try out (they are compatible with Medtronic pumps when you use Animas reservoirs with them).

I hear the Animas 2020 is looking to become compatible with the Dexcom 7 which has recently become available in the UK (and if I win the lottery, I will be buying one...dream on, Siobhan, dream on!). Whilst I realise that I will probably never get funding for sensors, nor will I be able to self fund them, it's nice to think that the option would be there in terms of the technology.

Cellnovo were an interesting bunch. I had heard about the product a few months ago but hadn't heard much more about it since - so it was great to see them there. In essence, the pump is much like the Omnipod in that it is a pod of insulin - however, it has tubing and a cannula which are seperate from the reservoir of insulin. It it held on to your skin by what is basically velcro. It is controlled through a very nifty looking handset - it looks much akin to an iPhone or the like. Very easy to use, bright, bold colours, generally a nice piece of kit. The downside being of course that if you lose the handset, you can only receive basal insulin. They assured me that if that were to happen, a new handset would be sent out within 24 hours. The other thing we noticed was that the bolus and basal increments were relatively large compared to other pumps out on the market and so would not be good for little children who need tiny amounts of basal.

They reckon they are going to clinical trials in May 2011 and are aiming to be out on the market by the end of 2011...so watch this space, I suppose! On a sidenote, and something really cool - I filled out a feedback sheet for Cellnovo and was told I would be entered into a competition to win an iPod Nano...which I did! That was a very pleasant phonecall to receive.

Also there was the patient advocacy group, INPUT. They help patients get better access to pumps, they campaign for better access, so on so forth. Ultimately though they are awesome because they care, and they really do do their best to help people out. I told the lady there the whole story of my fight to get a funded pump, and let's just say things are about to get moving, big time.

With that in mind, I started to really look at the Animas pump for the first time. I have always said I want a purple Medtronic Veo, however I have to say I think I have been swayed over to Animas. It has the same technological features, such as the small amounts of basal. I found it easy to use and liked the clear screen. But I can't get carried away with myself - I haven't got funding yet.

All in all, it was a fantastic experience. I loved knowing that my experiences, having grown up with type 1 diabetes, were helpful to other people (such as the man who queried how often he should expect his son to have a severe hypo - aka one that means you need help from someone else. I told him in almost 20 years I have had maybe 3 or 4 like that, and that whilst obviously it is a big risk it may happen, you have to put things into perspective. From what I gather, he was very grateful to hear it). I'll definitely be back next year, I'm saving my pennies already!

As an end note, the quote I have used for the title of this post comes from Jeff Hitchcock who runs the Children With Diabetes charity. He said it during his closing speech, whilst showing a photo of his daughter, who is 23 and has type 1, dancing on the beach. He covered some very moving things, such as the 'dead in bed' syndrome and why that's a good reason to let your person with diabetes always sleep with someone in their bed (it was when he said that that it all became a little too real, a little too close for comfort).

But ultimately, that's the truth: I have diabetes. I don't wake up everyday to 'be' diabetic. I wake up being the person that I am, and hoping that I will have my dance on the beach.


Heidi Colthup said...

Another thing Jeff said that I want to live by - "We're not here for Diabetes, we're here for SMILES!"

Wonderful weekend - even if I did spend most of it in tears!

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