A diabetes diagnosis affects the whole family, and a support network is vital, ZOE DELEUIL writes. We talk to two families about who supports them and share how Diabetes WA is there for those living with diabetes.
When both of their young daughters were diagnosed with type 1 diabetes within three weeks of each other, Ryan and Lana Spence had to get up to speed quickly.
“Our older daughter, Ashlyn, was lethargic and had lost eight kilos in a week,” Ryan says.
The first doctor they saw suggested appendicitis but, sensing something was seriously wrong, Ryan drove Ashlyn to Perth Children’s Hospital (PCH.) It was a busy public holiday in the emergency department, but the family wasn’t kept waiting for long.
“As we were sitting in the waiting room a nurse came over and said, ‘I saw you through the window – we’re taking you through right away. How long has your daughter had diabetes?’”
Ashlyn ended up in ICU for ten days, and by the time they left Ryan says it felt like they were on first-name terms with most of the staff. A few weeks later, their younger daughter Kayleigh started complaining about feeling unwell.
“We thought she was just trying to join the party and get some attention, but then she was diagnosed with type 1 diabetes too. It was a little easier with her as we caught it earlier, so she didn’t spend time in the ICU.”
Since those double diagnoses, Lana and Ryan have focussed on keeping life as normal as possible while also talking openly with the kids about the challenges of living with diabetes.
“They have each other to talk to, so that is a kind of inbuilt support network for them,” Ryan says. “At the start, I would also spend a lot of time just chatting to the health team over the phone about what was going on for us, and I found that helpful. It has its challenges, I can’t deny it, and it’s put a lot of stress on the family, but mostly we just get on with it.”
Along with their healthcare team, support has come from their daughters’ schools, as well as family and friends who have educated themselves about diabetes.
“Kayleigh is travelling to the US next year to participate in dance events and both the teachers and some of her friends who are going with her are completing training in diabetes via PCH so they are well informed about what she will need,” says Ryan. “Fortunately, our daughters have good friends, in school and through their sports, who really look out for them.”
The importance of family, friends and a sporting community is a sentiment shared by Kevin Bynder, a Whadjuk-Yued Noongar and Widi Badimia-Amangu Yamatji artist and business owner who was diagnosed with type 2 diabetes at the age of 29.
“Diabetes runs in both sides of my family,” Kevin says. “It’s a big problem in Indigenous communities because our bodies aren’t used to the western diet. People call it a lifestyle disease but it’s not that straightforward.”
Despite having lived with diabetes for 21 years, Kevin has built a thriving artistic practice and business, designing uniforms for organisations and sporting clubs (including Perth Wildcats, Fremantle Dockers and West Coast Eagles), painting community murals and working two days a week at PCH delivering art programs to children.
He says his biggest supporters are his wife and his wider family and community network.
“My wife does a lot for me when I can’t do things – not just emotionally but also physically. My five kids, who are now all teenagers and young adults, also help out a lot, even if it’s just a phone call saying, ‘how are you going today, Dad?’ These things are important because you know someone cares.”
Another challenging aspect of care can be when adult children realise their parents may need more support. Diabetes educator Cate Mitchell says there are lots of ways Diabetes WA can help adult children supporting their parents.
Glucose targets and strategies to manage diabetes can change over an individual’s lifetime and an in-person appointment at the Diabetes WA Clinic can help carers get up to speed. The clinic can offer advice on ways to optimise glucose targets, as a way to prevent hypoglycaemia and reduce the risk of falls – which tends to increase as we age.
“We can look at prescribed medications, check how they interact and recommend if a specialist medication review would be appropriate,” says Cate. “If, as a carer or family member, you feel you need more support, we can advise on referral pathways. There are a lot of ways we can help people supporting their elderly parents to live well.”
How Diabetes WA can help
Our health needs and circumstances are unique and always changing, but Diabetes WA is here for West Australians living with diabetes and their families. Here are some common situations and what we offer.
Your child has diabetes
We love our work with PCH delivering a school holiday Kids’ Camp for children with Type 1 diabetes. Here our goals are to connect children living with diabetes with one another, to increase their confidence in their ability to self-manage their diabetes and to reduce the isolation that can come from living with a chronic condition. It’s an active camp with lots of outdoor activities and games, showing kids that diabetes is not a barrier to participation.
We also deliver training to childcare centres and afterschool care providers who are looking after a child with diabetes, and we coordinate the National Diabetes in Schools program that is delivered under the NDSS for WA.
Your young adult child has diabetes
A diagnosis at this time of life can come as a huge shock for young people who are still getting used to their newfound independence. They often have work and study commitments and are at an age when they want to travel, go out and enjoy life.
Our type 1 diabetes educator, Narelle Lampard, says that the right support at this time from our clinic can see someone go from the shock of a new diagnosis to getting back on track and returning to work and studies.
This may also be a time when people who have lived with diabetes for a while may need a reset. Life is busier and managing diabetes gets more challenging. People living with diabetes who are over 18 and use insulin pens can attend OzDAFNE (dose adjustment for normal eating.)
This comprehensive workshop covers the skills of carb counting and insulin dosing that come with type 1 diabetes, along with other information.
Other questions that families have may at this time include the decision to stay in the public system or access private healthcare, if that’s an option. They may also have concerns around alcohol or self-management or be thinking about starting on new technology, such as a pump, and want to understand what’s out there for them.
Your partner has diabetes or is borderline
We frequently see support people attending both clinics and workshop programs with their newly diagnosed partners, or to have a re-set and establish better eating and shopping habits as a family.
We always welcome support people to our group education programs like Desmond (Diabetes Education and Self-Management for Ongoing and Newly Diagnosed) for people living with type 2 diabetes, and DESY (Diabetes Education and Self-Management Yarning), which is designed to support Aboriginal and Torres Strait Islander peoples living with type 2 diabetes and their families in a culturally safe way.
Our SMARTS programs cover a variety of topics, including shopping, carb counting, footcare and understanding medication, in a welcoming environment, and our OzDAFNE workshop is for those living with type 1 diabetes.
Please note that these are NDSS-funded programs for NDSS registrants only; people with pre-diabetes are not eligible.
Your pregnant partner has gestational diabetes
Gestational diabetes (GDM) is added stress at an already stressful time, and it’s common to receive conflicting advice and feel unsure of what services to link up to. There is a greater chance of going on to develop type 2 diabetes after having GDM, but lifestyle and dietary adjustments now can make a big difference for both mum and bub. We take a lot of calls from pregnant women diagnosed with GDM and we see women at the DWA clinic.
Your elderly parent has diabetes
Realising that your elderly parent or relative needs more help managing their diabetes can feel a little like starting a book halfway through, but we can help you catch up so they can continue to live a good life. Our DESMOND program can give supporters an overview of diabetes management, and you are always welcome to attend appointments with your parent if they would like you to come along.
You’re living in a regional area
Our Telehealth for country WA service provides free education and clinical support to people living with diabetes in rural and remote areas of Western Australia. Our credentialled diabetes educators provide virtual appointments to help you self-manage your diabetes. You’re welcome to have a support person or member of your healthcare team join the appointment, and we will update your GP.
Through Diabetes Connect, our endocrinologists support GPs and their patients to help them to receive care in their communities, saving long travel journeys to an unfamiliar hospital.
We also offer regional workshops and programs, so keep an eye our website or sign up to our newsletters at the bottom of this page to find out when our diabetes educators are in your area.
For more information, to ask a question, to book an appointment at our clinic or to attend one of our workshops, call our free helpline on 1300 001 880 (Monday to Friday) or email bookings@diabeteswa.com.au
