ONE CHAPTER CLOSES, THEN ANOTHER ONE OPENS I’m excited to let you know that I have started a new role as the dietitian advisor to the Galactosaemia Support Group (GSG) in the UK. This fits nicely with my three-daysa-week job in adult metabolics and I am very much looking forward to getting stuck into it! But, as I start my new role, we must not forget the dietitians who have worked so hard in the years beforehand to improve the diet for people with Galactosaemia. Pat Portnoi had been the society dietitian for 21 years before she retired this May. When she started the job, she was also working as a dietitian at SHS Ltd. Pat worked as a director at SHS and SHS Australia in the early years before it was taken over by Valio and then finally Nutricia, where she was head of metabolic nutrition for several years. She helped develop new products for metabolic disorders and worked closely with the UK and worldwide metabolic dietitians. In 2004, she left her post at Nutricia and concentrated more on the Galactosaemia dietitian role. One of her first jobs was to produce a national diet information sheet for Galactosaemia, as each hospital was using their own version. Another large job was producing the lactose-free lists [for Galactosaemia] of manufactured foods and baby foods. There was a government grant to help with this massive task, as it was before the labelling legislation. A major change to the Galactosaemia diet over the years has been the addition of hard cheese. In 2000, Pat organised the first analysis of cheese for its lactose content. Working closely with Prof Anita MacDonald from the Birmingham Children’s hospital, they were looking for cheese with a galactose content of
Louise Robertson Specialist Dietitian Louise is an experienced NHS dietitian who has been specialising in the fascinating area of Inherited Metabolic Disorders in adults for the last 10 years. In her spare time she enjoys running her blog Dietitian's Life with her colleague and good friend Sarah Howe. www. dietitianslife.com
less than 10mg per 100g (this has now been relaxed to 25mg/100g in the new Galactosaemia international guidelines [Welling et al 2017]). Over the years, they organised 14 different analyses and we now safely allow a variety of cheeses in the diet for Galactosaemia. Testing was also organised for butter, oil and ghee and they found them to be low enough as well. This has opened up the diet considerably for patients. All the cheese research had been supported by the GSG charity. More recently, Pat has been involved with the development of the TEMPLE (Tools Enabling Metabolic Patients Learning) books, which are a great resource for parents whose child has just been diagnosed with a metabolic disorder. The first job that Pat has handed over to me is to update the Galactosaemia diet sheets, then maybe to look into any more cheeses and their galactose content to see if we can safely allow other options. I am also hoping to promote the Happy retirement Pat GSG across social media and provide and provide more information to support patients and their families. Happy retirement Pat and thank you for all your hard work for the people and families of those with Galactosaemia. To find out more you can find the Galactosaemia Support Group at www. galactosaemia.org. www.NHDmag.com June/July 2019 - Issue 145
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GIVE THEM A LITTLE TASTE FOR ADVENTURE. Not only does it taste fantastic, PaediaSure Compact packs balanced paediatric nutrition (and 27 years of PaediaSure experience) into just 125 ml. And it comes in three great-tasting flavours.*1,2 How else could they reach Neptune?
PAEDIASURE COMPACT. HELPING KIDS BE KIDS AGAIN.
*Vanilla, strawberry and banana
REFERENCES 1. Data on file. Abbott Laboratories Ltd., 2017 (Sensory research and evaluation: PaediaSure Plus vs. PaediaSure Compact). 2. Data on file. Abbott Laboratories Ltd., 2017 (Sensory research and evaluation: PaediaSure Compact banana flavour and PaediaSure Compact strawberry flavour). Date of preparation: May 2018 ANUKANI170158c