Raynaud's Disease Support Group

Hello,

I'm sorry to hear about your little girl. I've had Raynaud's since I was little too. My mum tells me that when I was really little I used to cry and say it was burning. She used to keep me wrapped up all the time and made sure all my teachers and friend's parents knew. I wasn't allowed to go outside at playtime during the winter because as a small child I wasn't aware of being too cold before it was too late. By the time I was 11 or so I could tell when it was going to happen. I call it my coldy sense - it really is like spiderman's tingling before danger!

My fingers and toes go very cold and white before it actually starts to hurt. In fact, they're cold and white 90% of the time but if I'm going to have an attack they'll feel numb before they start to itch/tingle.

My Raynaud's is severe so I'm afriad it does hurt. I get attacks everyday. That said, I've lived a really full life, I've been a competitive athlete and gymnast, I went to Univeristy and I've even been skiing twice!

There are some just things that (for me at least) are a no no. I never touch ice/snow/anything frozen or really cold (I ask my friends to hold drinks cans or ice creams for me), I advoid the freezer isles in supermarkets or make sure I'm quick if I have to go there, if I get stuck in the rain or splashed by a car I change into warm dry clothes as soon as possible and I carry thick socks and gloves everywhere - even in the summer!

I know you must be really worried but I'm sure your little girl will cope just fine with Raynaud's. I don't know if any of that was helpful but let me know if there's anything else you want to know.