European Hormone Day

European Hormone Day

Today is European Hormone Day. A dedicated day bringing together the European endocrine community to raise awareness.

You can access our information about conditions we support, including Growth Hormone Deficiency, Primary IGF-1 Deficiency, Hypopituitarism and Precocious Puberty, here on our website where we have a range of information pages and booklets, along with some great video resources from our Growth Nurse Specialist Sally over on our YouTube channel www.youtube.com/@childgrowthfoundation.

Need to speak to someone? We are here to listen and support you. Call our support line on 020 8995 0257 or email us at support@childgrowthfoundation.org.

For more support and resources you can visit ‘You and your hormones‘, an online education resource from the Society for Endocrinology. You can also find out about other European Hormone Day plans on the European Society of Endocrinology website.

Mental Health Resource Project

Mental Health Resource Project

The Child Growth Foundation wants to provide more psychological support for young people living with a growth condition.

As part of this ongoing work we have launched a project to find out more about young peoples’ experiences of mental health and living with an undergrowth condition.

We have teamed up with health psychologist Dr Lisa Hodges from Cognitiva Consultancy Ltd, whom the Child Growth Foundation have worked with before, to develop a questionnaire with a focus on undergrowth conditions.

The findings will be used to create a resource to help young people who are struggling with poor mental health.

Who should fill this in?

We are looking at the experiences and views of young people aged 11 to 25. There are a few questions for the parents/careers/guardians of young people and their views on young peoples’ experiences.

Anonymity & confidentiality

All answers will be kept completely anonymous (not identifiable) and confidential (private) and many people’s answers to each question will be combined, so no one will find out what each person has said. You may not even be able to spot your own answers.

Other benefits of taking part

You may find it helpful to write about your experiences. Writing about your experiences here is an opportunity to raise awareness and what you write may help another young person.

Where will my answers go? Will they be safe?

All your answers will be kept safe with the Child Growth Foundation and Cognitiva Consultancy and will only be seen by the team working on this project.

To receive a copy of the questionnaire and the supporting information pack including a Q&A for families, please contact Catriona at catriona.taylor@childgrowthfoundation.org.

To express our thanks for taking part in this study, a £20 Love2Shop e-gift card will be provided to the first 20 young people who complete the questionnaire.

Inequalities in the assessment of childhood short stature

Inequalities in the assessment of childhood short stature

A paper has been published in the British Journal of General Practice highlighting the varied inequalities in the assessment of childhood stature, including systematic gender and racial biases.

As the paper shares; early detection of short stature is key to optimising health outcomes, however, there are significant social disparities in the assessment of childhood short stature.

We have shared some of the key issues raised below. You can read the full paper here.

“There are significant social disparities in the assessment of childhood short stature. This presents additional challenges and it is crucial that clinicians recognise issues relating to gender, race, and poverty to improve timely diagnosis and reduce health inequalities.”

“Girls are less frequently referred from primary care for assessment of short stature, yet often have more severe growth failure at presentation and have higher rates of underlying pathology compared with boys.”

“Bias inherent in health professionals also contributes to disparities in the investigation and treatment of short stature. White children, especially those from higher socioeconomic groups, are not only more frequently referred for concerns about growth but are also more likely to be offered growth hormone (GH) stimulation testing than children of other ethnicities.”

“Although the assessment and treatment of short stature should be driven by clinical concern, biased clinical decision making is disadvantaging girls and some ethnic minority groups, especially Black children. Paradoxically, these groups have the greatest need.”

“These systematic racial and gender biases in clinicians and families are often unconscious, but must be acknowledged and tackled before healthcare inequalities can be addressed.”

“Raising awareness of the health disparities in the assessment of childhood short stature in caregivers, primary, secondary, and specialist clinicians is key to addressing these issues.”

The team at Child Growth Foundation are proactively working on how we can support this work needed to address these inequalities and the challenges these inequalities bring to many children and families.

Two of the paper’s co-authors are CGF’s Medical Advisors, Professor Helen L Storr and Professor Justin Davies, with the paper featuring quotes kindly shared from the CGF community of families. Thanks to them and to all involved in this paper for raising these important issues.

The authors of this paper have also published ‘Assessment of childhood short stature: a GP guide’ which is also available on the British Journal of General Practice.

Trustee Anthony takes on his second CGF marathon

Trustee Anthony takes on his second CGF marathon

This year, I am running the London marathon by accident. In 2021, I did it deliberately, with a charity place kindly given to me by the CGF. I raised a couple of thousand pounds, cleared the finish line in under four hours (hurrah), and ticked a box on my bucket list. Boom. No need to do that again.

Trouble is, they’re sneaky. If you apply to run the London Marathon and choose to donate your entry fee, they send you a rather snazzy running top if you don’t get a place. And given there are millions of applicants for around 50,000 places, you’re almost certain not to run. The 2023 ballot opening coincided with me deciding I could do with a new top for the winter months, so I entered, with the cast-iron certainty that I wouldn’t get a place, but I would get some lovely – and surprisingly good value – new exercise gear out of it.

Three weeks later, the email arrives: ‘You’re in!’. Whoops. That backfired.

My wife Jacqueline is, as ever, a fountain of support: ‘So you entered a marathon you’ve already done, that will mean you’re disappearing off to train every other day for months, leaving me with the four kids, at a time when we’re not only trying to move house, but also move city, without so much as consulting me, because you wanted a geeky jacket that you could have just, y’know, bought?’

The answer to this question, inescapably, is: yes. It sounds – as it always does when she says it – as though I haven’t been thinking rationally. For a moment I wonder whether the most gracious course of action would be to withdraw, but then a lightbulb pings on somewhere in the murk of my brain.

‘It’s for… it’s for the Child Growth Foundation.’. Checkmate. She wouldn’t argue with a children’s charity. What is she, some kind of monster? The argument is nipped in the bud, I get to spend a Sunday in April leaning into my middle-aged running habit, and maybe we’ll get some cash in the CGF coffers in the process. Everybody wins, with the possible exception of my wife.

Our family has been involved with the CGF for the last five years, since our son Ivo was diagnosed with Sotos Syndrome at the age of five. The foundation was a tremendous source of support and information for us when it came to navigating the confusing world of Ivo’s condition. That’s why I’m proud to have been able to use fundraising for the CGF as my excuse for indulging my mid-life crisis on several occasions over the last few years.

Towards the end of 2021, I was invited to join the board of trustees – which, I like to think, is the forty-something dad’s equivalent of an elite athlete being offered a Nike sponsorship deal. At first, I was a little anxious about accepting; I was under the impression that charity trustees were all hugely gifted, desperately clever pillars of society with a plethora of professional skills and a dedication to saving the world. Now, after a year in the role, I am pleased to report that this is not the case – and not just because I joined the team.

Joking aside, the CGF board is a fantastic bunch of people, from all walks of life, united by personal or professional experience of dealing with growth conditions in children. Any concerns I had about ‘being qualified’ to be a trustee were rapidly alleviated, as I realised the board had built a culture where all views were valid, everyone was listened to, and in which everyone was free to be themselves and make their contribution without fear of being judged. There is work to be done of course – this has been a hugely busy year for the CGF, with a lot of changes and new faces on the scene (mine included) – but it’s also been a lot of fun to be involved, and hugely rewarding to feel as though I’m making a difference, however small it might be.

And making that small difference is why I’m happy to be ‘annoying charity guy’ in my friends’ Facebook feeds yet again; why I’ll be pulling myself out of bed early on a weekend morning for the next few months to get the miles in; why I’ll be boring my family to death yakking on about marginal improvements to VO2 max and resting heart rate, and why, on the morning of Sunday 23 April, I’ll be stood on Blackheath with 50,000 other people, to start a race I’ve already run, for a cause I’ve already fundraised for – and I won’t even have that snazzy top to show for it.

You can sponsor Anthony at www.justgiving.com/anthonyleyton

Our March 2023 newsletter is out now!

Our March 2023 newsletter is out now!

The last edition of our bi-annual newsletter is out now!

Members of the Child Growth Foundation receive a printed copy of the newsletter delivered straight to their door as part of their membership benefits and their March 2023 edition is arriving through post boxes as we type!

To read an online version of the newsletter, you can read this on Issuu or you can download the newsletter PDF.

 

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Thank you so much to everyone from our Child Growth Foundation community for sharing their stories, updates and news with us. If you’d be interested in featuring in a future newsletter we’d love to hear from you! We’re at news@childgrowthfoundation.org.

Happy reading!

Child Growth Foundation

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