So after living with ET for the past 10years and never doing any research into what it was or how many other people are affected by it, I thought it was time to finally have a look!
Just to give you some insight into my background I’m a 23year old female living in the UK and was diagnosed with ET at 13years old! From what I’ve been told by previous doctors I am one of the youngest people to have been diagnosed with ET.
Over the years I have been on most of the medication available to ET sufferers from Hydroxeurea (tablet form) to Anegralide (tablet form) and finally peg interferon (injection) without realising I have suffered most of the side effects of the treatments but have never voiced them to a doctor because somewhat unwittingly having had the disorder for so long and from such a young age I never realised that the symptoms I had where down to me having ET and taking medication for it.
Symptoms range from – hair loss, burning sensation in hands and arms, fatigue and general tiredness (all the time), shortness of breath, pins and needles, needing the toilet all the time and finally severe anxiety!
Today is the first day that I have realised that all these symptoms which I just consider to be ‘normal’ are actually down to me taking medication for ET. Even so I want to stress that I feel that even with these symptoms I have lived a completely normal lifestyle and most of the time even forget I have ET.
It's taken me 10years to realise that there are support groups out there for people like myself and hopefully now I can get some of the questions answered that have been preying on my mind all these years. And in return I hope that I can help and support people like me that have had to deal with ET from a young age.