Now you know a bit about what TS involves I am going to try and explain what it is like to have Turners Syndrome.
I have known from birth that I have had Turners Syndrome as when I was born I had puffy hands and feet and a webbed neck. This aroused the doctors suspicions that I had TS as the doctor was a specialist in its diagnoses. I had a blood test to see what was wrong and this then took a week but it soon confirmed that I had Turner Syndrome. Once my mum and dad found out I was referred to Great Ormond Street Hospital. When I was 3, I was prescribed growth hormone injections, which my dad gave me each night in my leg. I was regularly, attending the clinic for people with Turners Syndrome at Great Ormond Street Hospital with Dr Richard Stanhope. Here I was weighed and measured to check spine growth, height growth and later on skin thickness. I also had a blood test every year to check a range of things.
I have subsequently now been transitioned to adult clinics at UCLH where I get Bone Density Scans, ECHO, Kidney Ultrasound, Blood tests and any other regular checks needed which aren’t many. During this time you can chat with the endocrinologist and gynecologist regarding any concerns or updates and also look at fertility options.
Now I’m 4″10/11. I have stopped growing with the injections so I have stopped taking them. I have to have tablets with oestrogen to replace a hormone that is missing.
Having Turner Syndrome hasn’t affected me a lot apart from having to take tablets and injections and the odd comments about my height. I get on at school and am like any normal person at the end of the day.
I will regularly keep going to the hospital appointments so if anyone would like to ask me about what they do or how I got on then you can just send me an email via the contact me.
Thanks for taking the time to read this hope it’s been informative.