Story
💕Our girls have a rare genetic condition called Congenital Adrenal Hyperplasia - CAH for short.
So, what is it?
🧬CAH is group of inherited conditions that are present at birth (congenital) where the adrenal gland is larger than usual (hyperplasia). In CAH, the body is missing an enzyme (chemical substance) that stimulates the adrenal glands to release the cortisol hormone. Lacking this hormone means that the body is less able to cope with physiological stress, which can be life threatening🧬
Cortisol is the body’s natural steroid and has three main functions:
• helping to control the blood sugar level
• helping the body deal with stress
• helping to control blood pressure and blood circulation.
Children with CAH are usually cared for by a team including endocrinologists and urologists. Initially, children with CAH will need to be stabilised with intravenous fluids to restore their electrolyte levels. Once stable, cortisol and/or aldosterone replacement therapy can start with repeated blood tests to monitor hormone levels so the most effective dose can be prescribed 💉
💊Children with CAH will need to take replacement cortisol every day for the rest of their lives. However, if a person with cortisol deficiency becomes unwell, they are unable to increase the production of cortisol in their system to help the body cope and this could be life threatening 🙁
A lot to take in, I know!! 🙈
🏥 Children living with this condition endure so many hospital visits, are poked & prodded for bloods etc and have to learn themselves how to recognise the signs of Adrenal Crisis. They are warriors!! 🥰
📕 With limited funds and research it’s becoming increasingly difficult to find new medicines and boost knowledge around CAH. So, I wanted to aim to give something back to help raise awareness and also to note with the right dosage this condition can be treated and well managed. 💊
To raise some funds I’ll be arranging a
”CAH - Wollaton Walkies”
On Saturday 18th May 2024
I shall be walking around the beautiful grounds of Wollaton Hall, Nottingham. 🦌Wollaton is a special place for me, childhood walks, taking Maddie from a baby to her riding her bike, and most recently after having Gracie it became my “safe walkies”. I could visit, get some fresh air, take the doggy out and it became one of the first public places I started administering Gracies medication 💉 Which, can be very daunting. 😳
💷I’m not just raising funds though, I’m also looking for walkers 🥾 If you’d like to take part I’ll be throwing in some practice walks or if you‘d prefer to join on the day then please feel free to message me!
Money raised will go to Childrens Diabetes Endocrine Fund, Nottingham. This best matches our girls condition 💕
Thank you all!
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