Long Lost Friends

Well, what a couple of weeks it’s been. I’ve got behind with blogs etc again lately, mainly because I’ve been busy, but also by the time I’ve had the chance to write a blog I’m just too tired. Anyway, something happened over this fortnight and I’d like to share the story with you.

In 1982 my Mum was introduced to two families who had children with the same type of Ichthyosis as I have (Bullous Ichthyosis). One of the families had a young son with the condition and the other family had a young daughter with the condition. Even less was known about our condition then than is known now, and our parents thought they were alone in having children with this debilitating condition. That was until our consultant dermatologist introduced us in 1982.

As I was so young at the time of our meeting (I was around 4 years old), I can’t really remember much about it and therefore thought that I’d never met or seen anyone else with the same condition, until I attended the ISG (Ichthyosis Support Group) first National Day in 1998. Over the years my Mum often spoke of the families we met back in 1982 though, and she often thought of them and wondered how they were getting on. After this first meeting we sadly lost touch, and have since then been trying to find each other.

A couple of weeks ago, I received a message on face book from someone named Joanna, and it turns out it is the same Joanna that my family and I met all those years ago. We are thrilled to be back in touch with each other, and we also found out that after all these years we live not far from each other too. I replied to Joanna’s message straight away and since then we’ve kept in regular contact, catching up and have spoken on the phone a few times too. On Good Friday (2nd April) we finally met, and I can’t tell you how lovely it was to finally meet again after all this time. Now, this may sound daft to some people, but it felt like I had found a long lost sister. Even though we only met the once when we were really young, when we met on Friday it felt like we’d actually known each other all that time and hadn’t been out of touch (if that makes sense?). It was an emotional reunion for both of us as you can imagine, and we got on so well and found we have a lot of the same interests including the same taste in music (mentioning no names *cough* Darren Hayes & Pink lol)and we both love 80's music too.

We’re definitely going to keep in touch and I know we will become firm friends. We still have a lot of catching up to do, but we have plenty of time for that now. We now both have someone close to home who we can talk to, someone who understands what we go through with Ichthyosis. We are also planning to start our own kind of support group in the Manchester, Bolton and surrounding areas (as we know of a few more people affected by Ichthyosis in the area now too). In the hope that we can bring fellow sufferers together to share their experiences, offer support, information, organise events and meetings and generally just be an ear or shoulder for those affected by the condition. Just in case you haven’t seen it here’s a link to the website:

Ichthyosis Awareness Week is coming up here in the UK, and we will be doing our bit to contribute to that - but that’s another blog which will be coming soon.

I’d like to say a huge thank you to Joanna for getting in touch. I can’t tell you how happy I am that you did. You are a wonderful person and I am proud of you too. You may not realise or believe me when I say this but, you inspire me. Sorry to get all soppy but it’s true.




Thank you - Friends for life :-)