Cure or Remedy?

will we find a cure for diabetes?The following may offend some people. But I am going to say it anyway, because it is what I think and believe and hopefully may help some people to feel better, more peaceful and accepting of their lives with diabetes.

When I was diagnosed in 1979 we were told there would be a cure for diabetes for sure within the next 20 years.

Well 1999 came and went, without the said cure…..and so did 2000 and 2001, 2002, 2003, 2004……..and here I sit in 2012 with no cure for diabetes. However there have been amazing advances in our understanding of diabetes in all its forms and in options for management.

When I got diabetes I had to inject pork insulin, which was not brilliant and ruined my legs with lumps and bumps; and do urine testing. Blood glucose monitors followed close behind but they were massive and took ages, with many steps involved to get them to work. Here we sit today with monitors that can connect to your iphone and take 5 seconds to give a result and I use a brilliant little Insulin Pump named “Pumpy”.

In 2001 I started working in diabetes. I was excited, amazed, shocked and overwhelmed when attending my very first diabetes conference, at all of the pharmaceutical companies involved in diabetes and at all the money poured into research. I am now an old hand, having attended dozens of conferences both in Australia and Overseas. I am now chuffed to say I am asked to be a speaker at these conferences and am working on research myself.

The research I am involved in however is a little different. I chose to dedicate myself to making life for people living with diabetes a little easier, a little more peaceful, a little less overwhelming. I chose to find ways that people can live WITH diabetes and still do what they want to in life.

I get why people, in particular parents of kids with type 1 diabetes, talk about the “fight against diabetes”, the “battle” they and their kids go through each and every day, like a knight going in to battle a dragon. I live with this myself and as a Mum of  three boys have imagined millions of times how I would cope if one of them were to be diagnosed with diabetes – which is of course on the cards given their slightly increased genetic risks.

What worries me is when I see people just talking about life with diabetes as a “fight”. A “battle” we are in, with “winners” and “losers”. And when the total focus is on finding a cure, rather than on learning to live with and maybe even embrace, diabetes, how does this make a person feel?  If a child for example believes there will be a cure and then life will be brilliant, do they get a chance to see life can be brilliant right now? And what happens to their emotions when this cure does not happen in 5, or 10, or 20 years time? How do they deal with that?

To me, living life like a battle is no way to live. It speaks about not being able to accept diabetes, not being able to make it a comfy part of life. But to face up to it like an enemy to be taken down. In reality those of us living with diabetes have to do exactly that – live with it.

The thing is, I don’t think we are close to a cure for diabetes. And “diabetes” is such a broad word for so many complex conditions. If we are talking about a “cure” for type 2 diabetes for example, some people would say there is a cure – lose weight, move more and presto – cured. I know this not to be true. You can not be cured from type 2 diabetes. You can however prevent it happening in some cases, slow it down in some cases and yes, even get it so well controlled with healthy lifestyle changes that your blood glucose goes back to non diabetic range and you no longer need medications and insulin – but don’t trick yourself, it is not a cure in the true sense of the word.

In terms of type 1 diabetes – we are way off. We have all sorts of theories and ideas and some make great sense. One of the biggest barriers is the autoimmune element – if we cure someone, how do we then switch of the autoimmune response?

Billions of dollars are invested in diabetes research and pharmaceuticals. Can you imagine how many people would be out of a job if they did find a cure? The mind boggles.

Call me cynical, but I for one would rather focus on the new and emerging technologies to manage diabetes, so that I can have the best possible quality of life with diabetes. I would rather focus on communicating and connecting with people who live with this tricky condition so that we can share the load. I would rather be a person living with diabetes than a person “fighting” diabetes. I am not calling for research to stop or trying to put down the very real feelings people have about being in a battle. I have many days where I feel confused, frustrated, burnt out, worn down, sad and scared due to my diabetes. It does not mean I don’t wish there was a cure.

It does not mean I am happy I have diabetes. It does not mean I don’t have  bad days, weeks or months. Of course I support all of the researchers working hard to find this elusive cure. Of course I feel deeply for the families out there dealing with diabetes every minute of every day – that is why I do what I do. I am also very grateful for all the work done by the Pharmaceutical industry to bring us better products, tools and platforms to manage our diabetes.

But you know what? It also means I for one am not entering into a “fight” or “battle” with my diabetes. I am trying to make it my friend, not my enemy. I am trying to just live with it and understand this is part of who I am.

Helen

 

18 Comments

  1. Kate Brown on February 20, 2012 at 4:04 pm

    Like Like Like. THIS is, as a parent, the attitude we’ve chosen to take with our son. Right from the start. It’s not that we don’t believe there ever won’t be a cure, but right now – here and now – he is living WITH diabetes. We hope and pray for a cure, but we don’t live our lives waiting for one. Life does go on. It can be a battle for us all – with or without diabetes. Learning to live with diabetes is learning to make peace and accept what you have to live with, and to move on. Thanks, Helen, for letting me know I’m not alone.

    • Helen Edwards on February 20, 2012 at 4:12 pm

      Hi Kate thanks so much for reading and responding, The more of us talk about it the better we will all feel about the wonderful life we have all been given – diabetes and all. And if a cure is found, we will all line up with our hands held together and be thankful 🙂

  2. Wendy Waters on February 20, 2012 at 8:25 pm

    I too, feel this way Helen. The advances Ive seen over the last 25 years in technology are amazing and make living with diabetes so much easier. To be completely honest, I would be happy with a pump that also monitored blood glucose and adjusted the infusion rate accordingly- to me that is a cure- a prosthetic pancreas that is not at the mercy of my immune system.

    • Helen Edwards on February 21, 2012 at 8:27 am

      Thanks for sharing Wendy. I think that is also a realistic “cure” concept, that we are not all that far away from 🙂

  3. ashiebee on February 20, 2012 at 8:42 pm

    Hi Helen, I agree completely! As a diabetic student heading along the path to become a health professional, I have days where I think “what will my life be like if there is a cure for diabetes? Will it be emptier?” Either way I don’t think much will change with exception to the obvious lack of testing and needles. In fact I will probably feel a little empty after being so used to it!

    New technologies that are arising to help diabetics cope with everyday life is astounding, especially compared to 20 years ago. For that alone I am already grateful!

    • Helen Edwards on February 21, 2012 at 8:26 am

      Hi Ahsiebee thanks for reading and posting! 🙂 I agree, I am soo used to it after 33 years it would be odd without it – so much spare time!

  4. Lee Johnston on February 20, 2012 at 11:32 pm

    As a mother of a 3 year old child with Nephrogenic Diabetes Inspidus (the “other”) diabetes, i still find this interesting and so true. All we can do is live with his condition, make sure he has plenty of access to water, extremely low sodium diet, and take his meds. The same can be said of any serious lifelong illness. You need to do the right thing when it comes to managing it, but it shouldn’t be any reason to not live life to the full! Thanks so much Helen.

    • Helen Edwards on February 21, 2012 at 8:03 am

      Thanks for reading and comments Lee – so nice to hear people feeling this way too! 🙂

  5. Wayne Noble on February 21, 2012 at 10:32 am

    Hi Helen, While i don’t have diabetes or closely related to someone with it, I do have a loved one who does have a child with T1D. Over the past 2 years i have become aware of diabetes and how to live with it. I read your article with great interest and think that you really do put your heart and soul into helping others understand exactly what is involved. I do hope and pray that acure can be found for T1D. I look forward to reading more articles and improving my knowledge and understanding of diabetes and try be of some help to those who suffer from T1D.

    • Helen Edwards on February 21, 2012 at 11:50 am

      thanks for reading our blog and your lovely comments 🙂 It is people who live with diabetes who provide the best support to each other so I am sure you will be able to do this!

  6. Wendy La Velle on February 21, 2012 at 10:54 am

    Helen, I agree with you totally. My son Zach was diagnosed at the age of 7 and with in the first week he was drawing up his insulin and injecting and testing himself. Not because I am a lazy mum but because I knew one day he will grow up and have to manage his diabetes on his own. Of course I have been there for the past 10 years to help and support him and try and battle the dragon for him. However I have also taught him that this is HIS disease and he needs to own it and live with it and not let it rule his life. He has gone through the “why me” and the rebellion and burn out stages of Type 1 but at the end of each day he is still living with Diabetes and owning it with me there to support him.
    Thank you Helen xx

    • Helen Edwards on February 21, 2012 at 11:17 am

      thanks Wendy 🙂 He sounds like a very normal and beautiful young man

  7. Tanya Dunning on February 21, 2012 at 9:42 pm

    This is SOOOO true! My 10 year old daughter, Mia, was diagnosed only 6 months ago, so still really early days for us, but already we are trying to make Diabetes fit into our already packed lives, not the other way round! We have heard so much about the cure around the corner, but have always thought, how far around that corner? Because to a child, ten years is a LOOOONG time, and it might not come. We are trying to teach Mia that she can lead a perfectly normal life with or without the cure! Not to say that this disease sometimes sucks the life right out of you, but tomorrow is another day and with or without a cure it is a day that is beautiful just waiting for you to enjoy it 🙂 Thanks Helen x

    • Helen Edwards on February 22, 2012 at 7:31 am

      Hi Tanya thanks for reading and commenting – that is a lovely way to be and I agree to a child tomorrow can seem a long time! 🙂

  8. Siobhan on February 22, 2012 at 6:34 pm

    Amazing and realistic point of view from someone living with this condition. I am a fairly new parent of a 7year old type 1 (6months diagnosed) and I want my son to hopefully believe that it is ‘ok’ to have this condition, but to manage it as best as possible for his future health. I don’t believe there will be a cure for him, but hopefully many more improved methods of administering insulin and blood glucose monitoring. And I would like to see the Government set up Diabetes Health Access Centres, so people who have this condition, seek assistance on a regular basis from educators and psychologists especially for children and teenagers.
    Thank you for your encouraging view point and I agree with you!!

    • Helen Edwards on March 1, 2012 at 8:13 am

      Hi Siobhan thanks for your very real comments. I have wanted counselling to be part of regular care for many years and this is still my goal. Maybe one day we will get there. It takes time for everyone to find their place with diabetes and it sounds like you have a wonderful balance 🙂

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