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A day in the life of: Growth Hormone Deficiency

A day in the life of: Growth Hormone Deficiency

A day in the life of: Growth Hormone Deficiency

Age 21 months

Growth condition: Growth Hormone Deficiency (GHD)

Typical morning: I eat breakfast with my older sister, some days I enjoy my breakfast, other days I don’t have much appetite and I eat breakfast gradually throughout the morning. Mum and dad have to make sure I have eaten because I’m only able to fast for 10 hours over night to make sure my blood sugar levels don’t drop too low. I love listening to my tonies (audio stories) with my sister at breakfast time.

Typical afternoon: After my midday nap, I usually play at home or out and about. I have a special yogurt to eat with lunch or as a snack which gives me extra calories and nutrients to help me grow.

Typical evening: After dinner, my sister and I watch my favourite tv show Pocoyo. This helps keep me still whilst I have my daily injection. My injection doesn’t bother me, I hardly notice it. Pocoyo helps to distract me. My family are really proud of how brave I am. I have some extra vitamins and formula before bed to make sure I’m getting everything I need.

My favourite thing to do is: I love shoes, I’m always trying on different shoes I can find at home. I also love climbing and going on my bike. I love trucks and cars and one of my favourite things to do is go outside and look at the vehicles pass by. 

My least favourite thing is: I don’t like brushing my teeth! This is way worse than my daily injection! 

The best thing about having GHD is: I’m lucky that my growth condition can be treated and I am under a really supportive medical team to help me grow and develop. My growth condition has given me resilience and I will grow up knowing I can face any challenge in life. 

The most challenging thing about having GHD is: I’ve got lots of medical appointments and sometimes I get anxious, but I’m getting more used to doctors and nurses. 

One piece of advice I would give to someone who has this growth condition and/or is a parent carer of a child with this growth condition is: Don’t forget to enjoy your child in the present because you’re constantly worried about what their future will look like. 

One thing I want to share with others about life with a growth condition is: Comments about height can have a profound impact on individuals with a growth condition, especially when those comments are insensitive or repetitive.

External research study: Adherence to weekly growth hormone treatment

External research study: Adherence to weekly growth hormone treatment

External research study: Adherence to weekly growth hormone treatment

A research team at King’s College London are running a study on adherence to weekly growth hormone treatment, aimed at children aged 3-16 years old who have Growth Hormone Deficiency and have weekly growth hormone treatment.

Contact: [email protected] and see the poster below for further details.

External paid research study – GHD patient and caregiver experience

External paid research study – GHD patient and caregiver experience

55LDA Research are an independent medical research company working on behalf of a pharmaceutical company  to support a piece of market research designed to define ways to support both people living with and caregivers of people living with Growth Hormone Disorders (GHD). The aim of the research is to gain more insight into how this condition affects their daily life and to sense check potential patient support options to ensure our client is able to provide the best patient support possible, particularly for the adolescent population.

To this end, they are seeking to speak with 6 adolescent patients and 4 adult caregivers of adolescent and juvenile patients with GHD (2 caregivers of patients under 10, 2 caregivers of adolescent patients). Adolescent participants under the age of 16 will need to be accompanied during the interview by a responsible adult, who will not participate in the interview but who needs to be present in a supervisory capacity.

Participation in the research will involve patients / caregivers taking part in 60 minute remote interview via Zoom or similar. All answers are strictly confidential and the study is non-promotional; anonymity will be kept throughout. Patient names will not be revealed to our client and will not be made available publicly, so patients can feel free to speak their minds.

Adolescent participants and caregiver participants who complete the 60 minute interview will be reimbursed £100 for their time. Adult supervisors of adolescent patients will be reimbursed £50 for accompanying their minor during the interview (‘accompanying’ in this sense will entail being present in the room whilst the 60 minute remote interview is taking place). The organisers will also kindly donate £50 to the CGF where participants note our charity name. 

The research has been designed in accordance with MRS and BHBIA standards and participants’ personal data will be protected under the GDPR and no personal identifiable data will be shared with the BHF.

For anyone interested in participating, please use this link to complete some brief screening questions to ensure that the study is suitable for you, or contact Rachel Barnes at LDA Research at [email protected].

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 [email protected].

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.