Friday, 6 June 2014

Pour Some Sugar On Me

Diabetes Awareness Part 2
This is the second installment of  a multi-part series that includes the perspective of Martin and his 11 year old son Rehan and life after Rehan was diagnosed with type 1 diabetes.  To read part 1 click here

diabetes wordle
Image courtesy of Yale Scientfic Magazine

How has diabetes impacted Rehan's participation in social activities/sports and school?
Once he recovered from the dramatic weight loss before his diagnosis we have tried to keep Rehan participating in extracurricular activities as much as possible. That usually means that we have to go along with him to help him manage his blood sugar. In the case of Scouts, this has meant that I go with him to scout camp to supervise his blood sugars. Even for school field day trips his mother goes with him. As he learns how to manage his condition better over the next few years he will have more and more independence.

What is the biggest misconception of Diabetes you and Rehan have faced since his diagnosis?
We have been very fortunate to have highly supportive friends and family. Most people just know very little about the disease, rather than having misconceptions. Often people are aware of treatment methods using injections only once or twice a day with dietary restrictions that are now considered out of date.

What was your biggest misconception as a parent?
Before our son was diagnosed I thought that diabetes was caused by sugary food and drinks. Type 1 diabetes is an autoimmune disease cause mostly by genetics combined with an unknown trigger. There is nothing known that anyone with Type 1 diabetes could have done differently to prevent, or even delay getting it.

Have you faced any roadblocks in educating teachers, parents of friends and coaches?
One huge issue we face is the lack of an Ontario wide school policy for diabetes. Each school board seems to have it's own policy that is often badly worded and incomplete. One of the medicines that Rehan carries with him everywhere is Glucagon. If he has an hypoglycaemic event and passes out it needs to be administered immediately, similar to an EpiPen for peanut and bee sting allergies. Unfortunately our school board has a policy of not administering this life saving medicine to my son, and instead wait the 20 minutes it will take for a paramedic. We are working with SOS Diabetes on the lobbying effort to fix this before an Ontario child dies due to these poor policies.

What's the craziest thing you've ever been told about diabetes, the weirdest thing anyone has said to you?
I think the craziest thing I have heard is that my son's teacher is not supposed to administer the life saving medicine to my son should he is pass out and clearly need it.

What have you learned from this that has made you a better parent?
I have a much better perspective on things. There are things that need to be done, and things that don't need to be done. With a child who suffers from a chronic life threatening condition, the boundary between these two is a lot clearer. I need to give my son the medicine. He needs to be supported to not hate the disease and refuse or interfere with treatment. These are important things. The other day he forgot his lunch at home. I had to drive 45 minutes there and back from work to go and get it so he could have it for second nutrition break. In the past this would have been a big deal. Now this is just part of life and the "new normal".

What advice or resources would you recommend to parents of children who have just received a diagnosis?
I would highly recommend that parents of newly diagnosed children reach out to local and Internet based resources for information. In particular in Canada the work of a group called 'I Challenge Diabetes' stands out as exceptionally supportive. But also the Juvenile Diabetes Research Foundation (JRDF) and the Canadian Diabetes Association (CDA) or the American Diabetes Association (ADA) outreach programs are critical. There are numerous parent support groups on the internet and on Facebook

Stay Tuned for Part 3 where we'll get Rehan's perspective.

To celebrate his 40th birthday and run for the cause Martin is running a 5KM to help fight the disease iva JDRF.  To find out more about the JDRF click here.  To support Martin click here

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