Lizzi Hooks’ Story

Date: Tue 1st October 2019

Proud mum Lizzi Hooks, 38, has lived with Raynaud's phenomenon for most of her life. Lizzi self-diagnosed with Raynaud's aged 14. Her symptoms – including a strong reaction to temperature changes – can make everything from grocery shopping to a paper cut difficult to manage. Although the condition comes with its trials, Lizzi keeps positive and is surrounded by a supporting, loving family who help manage daily tasks when her fingers fail her.


How does your condition affect you?

I feel cold a lot and I struggle with going to the supermarket, especially in the cold aisles. Picking things up and getting my card out of my purse can be difficult because I lose dexterity. The pain in my fingers is the worst. In the winter I get dry and split skin and the smallest cut won't heal. My feet are also affected and I come out with white feet if I go into the sea. In the winter, if it's cold and icy I have to be extra careful about keeping my balance, as I don't always feel them.

Were you always aware that you might get Raynaud's?

Because my mum had it, it wasn't really a surprise, especially as my older brothers had it too. I kind of knew it was going to happen to me at some point. I wasn't worried about it all though.

Were you concerned about it when having your own children?

They may well develop it, but I can't do anything to prevent it so there's no point worrying about it.

How did your symptoms start?

It started with cold fingers and it went from there. I went to my GP first and got put on nifedipine, which I've been on ever since. I started wearing gloves everywhere and using other people to warm my hands up! I used to notice it a lot when camping with friends as a teenager, so I'd to find the nights really difficult and I'd have to wear lots of extra layers.

As you've gotten older, how have the symptoms developed?

They've gradually gotten worse. For example, I find doing the supermarket shop really bad and it can be stress related too, so after a long day I might get an attack and I'll make myself a mug of hot water to hold. When the kids were very little, it was tricky to do up fiddly clasps and stuff on their clothes.

How do your family and friends support you?

When I go to the supermarket, I usually end up honking the horn for my husband when I get home. He knows that's the signal to put the kettle on for me to warm my hands up and he'll come out and bring the shopping in, so the honk equals, 'my hands are bad come and help me!' My kids know that sometimes they'll have to help me with taking my shoes off and doing up buckles in the car and stuff like that. They'll always ask if I want the car seats heated up for my hands too, so they're used to it and they know sometimes I'll just need to go home because my hands are bad. They're growing up with it, so they don't know any different.

What is the most frustrating thing about the condition?

For me, it's frustrating that I can't do everything that I want to do. Whenever I'm planning, I've always got in the back in my mind, are you going to be warm enough? I live by the beach but I can't really enjoy surfing or other water sports because I'm worried about getting too cold.

Why do people need to understand the condition?

A lot of people don't understand how difficult and impactful it can be on your life. People with Raynaud's, I find, often don't talk about it much. So people who don't understand how debilitating it can be. I think it's really important that we teach more about it so that when you see that person struggling to get their cards out in the supermarket, you might be more understanding. And if more people knew about it, then I probably wouldn't get so many funny looks when I ask for a mug of hot water from every café. So my advice to anyone else with the condition would be, make sure those closest to you are supportive, invest in plenty of pairs of mittens and to buy a really good electric blanket!

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