Well, we just got, we just noticed a little lump on Emily’s neck. And at the doctor’s the next day we got a couple of tests done. And she was rushed in then, over the next week or so to get more tests done. We found out she had an overactive thyroid. We didn’t know the consequences of an overactive thyroid. But it’s frightening. It is that, yes, it’s frightening. You don’t understand it at first, but you get used to it. And then we went to do the trial, which, they randomly picked a treatment for her, to see which would be better to treat Emily, or to treat anybody really. Because they don’t really understand it. And we’ve just gone from there. She’s been rushed in hospital one time. Her heartbeat was 158 beats a minute. Which was quite frightening. It’s all thyroid related. She had, she’s got a, a heart condition, and her heart swells and she’s got fluid round it. But she’s dealing with it. She’s getting there. But, as I say, it, it is frightening, because you don’t understand it.
I can imagine actually. It must be quite, you know, how much they understand and how much they don’t understand.
Yes, well, I don’t think she fully understands the severity of her condition. She just thinks it’s one of them, the mood swings come along and her heart races and she starts panicking. And she doesn’t understand that if she does calm down her heart will calm down a little bit. But it will always be faster with the thyroid than without the thyroid problem. But she’s getting there.
And at that point, because it was soon after the diagnosis, they invited you both to take part or invited your daughter to take part?
So how did that feel at that time? Because she’d just been diagnosed and then you know the trial and…
Well, to be honest with you, I was all for it because I didn’t understand it and maybe with, going through with the trials I would understand it a little bit more. And it will help other people. Because, as I say, you don’t understand and you don’t realise what comes with the thyroid problem. And if you go through the trials and you get explained different things, different times, it helps. It really does help. And the nurses with her and the doctors have been absolutely fantastic. I couldn’t ask for better treatment. It’s just, because you’re on edge all the time, and when you speak to the doctors it lifts it a bit. So you’re a bit more relaxed. So you get to understand it that little bit more.
So was that one of the key reasons for taking part, do you think?
The key reason was if I could help somebody else understand and get through it, the better it is for everybody. Because it’s so uncommon for a child to have an overactive thyroid, that to understand it, you need to do these trials. You need something there to help other people and help yourself. So, fingers crossed, we’ll get there.