How twins cope with diabetes and have helped drive research towards treatment and a cure

THIS is a piece by me featured in this month's Sweet magazine. As someone whose family is affected by diabetes and who is facing her own struggles with a diagnosis, I've found it a wonderful magazine.

Pictured is Nicki Ward and family who was one of the mums to share their experience for readers.

AS a mother of twins, Abbie Pagett has always encouraged her six-year-old daughters to be as independent as possible.

Kelsey and Bethany are in different school classes and have their own friends and interests.

But there’s one part of their life that Abbie, and her husband Dean, 25, would have preferred them to have been more similar in– good health.

Tomboy Bethany was diagnosed with Type 1 diabetes aged just two. Becoming really thirsty, she was going through 10 to 15 nappies a day, twice as many as her sister.

“She’d complain of a tummy ache and it would put her in a really bad mood,” adds Abbie, 26, of the Isle of Sheppey.

“Kelsey and Bethany had always been healthy but then Bethany lost weight very quickly. Suddenly, her clothes were hanging off her. I didn’t know anything about diabetes but could tell there was something definitely wrong.”

Four years on, Bethany has an insulin pump to control the condition. Abbie says Bethany is continuing as ‘normal’ a life as possible – but also having Kelsey to teach about her sister’s condition brings extra challenges.

She says: “Kelsey isn’t old enough to help Bethany. That would be a lot of responsibility for a six-year-old, but we are being as open as possible with both our daughters.”

Abbie adds that having twins where one has diabetes also makes her the subject of increased interest from other people.

“Perfect strangers ask us personal questions about how we look after both our daughters,” she says. “It’s very annoying.”

While Abbie tolerates approaches about her daughters, twins – both non-identical like Bethany and Kelsey and identical - have long fascinated researchers.

That’s because twins offer unique clues into the effects of genes and environment on developing diabetes.

The world’s biggest twins study is at St Bartholomew’s Medical School in London. It began at Kings College Hospital Diabetic Clinic in 1967 and has played a major part in unlocking the secrets of diabetes and its causes, working towards finding a cure.

There are 501 pairs of twins currently taking part. Of these 331 pairs are identical. Professor David Leslie from St Bart’s says: “Identical twins are a pair of individuals with the same germ line genes - no other individuals are exactly alike.

“Similarities between identical twins might be due to shared genetic or environmental factors but differences must be non-genetically determined.

“Since an unaffected co-twin is at increased risk of developing the disease it’s also possible to study the disease process in some twins before the clinical syndrome arises.

“The causes of Type 1 diabetes may be due to either a factor in the environment, for example a virus, or because the disease is inherited, or, an interaction of environmental factors and an inherited predisposition.

“If one identical twin is affected and the other doesn’t then it’s probable the factor causing diabetes must lie outside the genes in the environment.

“The ability to separate environmental factors from genetic factors is what makes the twin study of crucial importance in trying to unravel the mystery of diabetes.”

One of the key findings has been where one sibling has insulin dependent diabetes and the other doesn’t, 34% of the ‘normal’ twins will eventually develop insulin dependent diabetes.

“By regular follow-up of these twins we can identify early markers that lead to diabetes. These can then be used to screen the population at risk and ultimately, prevent the disease,” says Prof Leslie.

“We’ve also discovered that some non-diabetic twins develop changes in the blood linked to the eventual development of insulin dependent diabetes. However, for some reason, so far unexplained, the abnormalities found in the blood could disappear and the twins remain normal.

“If we could discover why some non-diabetic identical twins can combat the disease process successfully, while others can’t, then we would be well on the way to understanding the cause of diabetes.”

Another recent piece of research involving twins reports a potentially important finding for those investigating the causes of early-onset diabetes.

American scientists from Stanford University say a trigger for the condition may have less to do with having a distinct set of genes than how the behaviour of those genes differs.

Professor Garry Fathman wrote in a recent edition of the Clinical Immunology journal “Take a pair of identical twins, with one having Type1 diabetes. Although both have precisely the same genes, roughly half the time the other twin doesn't get the disease.”

Rather than try to implicate a faulty gene, Fathman's team looked for genes in the diabetic twin that act differently from the same genes in their sibling.

He added: “We need to know that people are on their way to diabetes before they get hyperglycemic or, better, even before their insulin-producing pancreas cells have taken a hit."

While this potentially life-changing research continues, parents like Abbie continue to face more practical concerns.

For Jackie Jacombs, of Cheltenham, whose identical twin daughter Sasha, 14, has Type 1 diabetes, the lack of support available when she was first diagnosed was a major concern.

She says: “It was a big shock - not only the diagnosis itself, but also to find out just how difficult the condition was to control.

“I wanted to be able to communicate with other UK parents so I requested that the founder of the Children with Diabetes website set up a specific mailing list.

“I wanted to help parents find out about other insulin regimens and insulin pumps and exchange ideas about how we managed.”

Parents can also find support in helping care for one or more twins from other groups online and in the real world.

As well as finding guidance at www.childrenwithdiabetes.com and a dedicated Facebook page, there’s also a helpline for multiple birth parents – and often callers are those looking after one or more children with specific conditions.

Experts from Tamba (The Twins and Multiple Births Association) who run the helpline stress that coping with twins where one or both are ill can bring extra challenges.

Chief executive Keith Reed says: "You cannot underestimate the strain caused by caring for their families while juggling the demands of a multiple birth family. These families are doing a wonderful job.

“It's important that the parents take time to relax. We all know how difficult it can be to meet the needs of a young child who is ill, so to go through that at the same time as caring for their twin sibling and inevitably worrying about them too is even harder.

"Please take time to find as much outside help and support as you can. Speak to family and friends about how they can help. Having two children of the same age is already doubly taxing, so to add a condition such as diabetes to the mix, can be a recipe for exhaustion and even more stress.

"Find help from reputable support organisations and try and make the most of it. Our Twinline service is staffed by trained volunteers who are themselves parents of multiple birth children and they offer a confidential, free listening service.”

Case study: Nicki's story:

“I feel like the proudest Mummy in the world,” says Nicki Ward, whose son Ben was diagnosed with Type 1 diabetes in October 2007.

“When we found out it was diabetes, our world was turned upside down, I thought it was the end of our normal life – but I was wrong. My son has diabetes, diabetes does not have my son.

“We have to watch what he eats and inject him twice a day but it’s fine, I never thought I’d say that”

Nicki, 30, of Sidcup, Kent, and husband Jeff, 33, are parents to Carrie five, and twin brothers, Ben and Max, three. She says she has ‘fantastic’ support from a specialist diabetes team, plus friends and family.

She says: “The scariest thing is injecting Ben. That was the first thing I thought of. How could I do it?

“He’s just beginning to understand that he has to have injections and we need to test his blood and he's started to get a little more involved.

“Max doesn't really react to any of it, it's just normal for him and his brother. And Carrie has been wonderful. I know the day will come when Ben asks me why he has diabetes and Max doesn't, and I have no idea what I'm going to tell him.

“I was always conscious when the twins were babies about giving one of them more cuddles than the other, so much so that I didn't enjoy them.

Obviously I have to give Ben a little more attention sometimes but Max doesn't seem affected by it at all. I’d love to be able to give my children the same attention, but that's just not possible.

“We’ve been told that there is a 50-50 chance of Max becoming diabetic. He hasn’t got to have tests and I need to look out for the signs.”

Find out more

JDRF: www.jdrf.org.uk, www.jdrf.org

Juvenile Diabetes Research Foundation This international organisation helps Fund the St Bart’s twins study. Find out more about its work, or becoming a volunteer by calling 020 7882 2365) Children with Diabetes

Tamba

The Twins and Multiple Births Association offers advice and support for multiple birth families in a range of situations as well as having a network of honorary consultants concerned with areas including childhood development, education and health. www.tamba.org.uk Tel: 01483 304 442 Twinline: Call on 0800 138 0509 from 10am-1pm or 7pm to 10pm. Email out of hours on asktwinline@tamba.org.uk

Children with diabetes Family Support Network – database of families who can answer questions or offer more practical help: www.childrenwithdiabetes.com

You can also check out a group for UK families with children with Type 1 diabetes on Facebook.

Comments

[Fiona M]

A great piece, which helps take the fear out of, and gives understanding to, a sometimes challengine condition. I just want to add that, as a type I diabetic (juvenile onset) diagnosed over 20 years ago, although the teenage years can be tricky (with or without insulin demands!) it never stopped me doing anything. Today, with a family of my own, I hope I can prove that there's also hope of a normal life!

[Linda]

Hi Fiona,
Thanks for commenting and sharing your experience, I hope that other families who are starting their own research about diabetes can also find inspiration in what you have said here.
Best wishes to you and yours,
Linda

[Belinda Shale]

Hi Linda

Thanks for the links -very useful

Would we be able to link back to this article from one of our sites?

Belinda

[Linda]

Hi Belinda, yes I can't see any harm in that, thank you.