I have found over the years since Faith was diagnosed, that besides the struggle of getting medical professionals to recognize the symptoms related to HH, many family members and friends also don’t really understand what we go through day by day.
As a baby when people would ask about her seizures and I’d explain what a gelastic seizure was, you’d see that look of ‘oh, well that’s not bad then is it. As if because she’s not having a ‘proper seizure’ as they would refer to Tonic Clonic seizures, it was ok, because after all, she was only laughing. BUT NO, it’s not ok. I would find that I would have to explain in detail how it actually affects her and makes her feel and stress how many she actually has a day. I’d feel as if I had to over stress, how actually, it was horrible for her and the rest of the family being so helpless. What I really wanted to say was, how would you feel if it was your son/daughter and their innocent lovely laughter is turned into something that makes you feel sick inside and you dread to hear. And that they are forced to have these episodes every 5-10 minutes throughout the day.
It has now moved to the rages, and I find people have to say, ‘oh that’s normal every child goes through that.’ NO every child doesn’t still bite her own arm at five, so it bruises straight away because she’s bitten it so hard, still leaving bruising days later. I even feel at times that close family members feel I’m over exaggerating the rages and that they are completely normal. I don’t know if it’s because they don’t want to come to terms with the fact, that there’s a problem or if they generally don’t think there is anything out of the ordinary. It makes me feel quite lonely at times when things are bad as I don’t know who to turn to.
This again, stresses the need for awareness of HH and the wonderful work HopeforHH.org are doing to try and make more people and medical professionals aware. As mentioned my eldest daughter is putting together an awareness presentation, which she has nearly finished, and I hope it can be used to help spread awareness of HH and the emotional /physical symptoms individuals have to go through.