The Ichthyosis Support Group (ISG)

You will have seen the Ichthyosis Support Group mentioned a bit so far in this blog but I wanted to write a post specifically about who they are and what they do.

The ISG was founded in 1997 by a group of people affected by ichthyosis.  This was before many people had access to the internet and social media.  The aim was to create a network of parents, patients and medical professionals.  The committee who run the ISG is comprised of ichthyosis sufferers and relatives of sufferers. There are currently around 600 members in the UK and overseas.

So, what does the ISG do?  The ISG provides information and advice about living with ichthyosis, including type specific information, it provides advice from their medical advisory board, it provides links to a support team, it arranges summer camps for children and once a year it arranges a family conference.  In addition to this, the ISG also lobbies for greater research into ichthyosis, raises awareness of ichthyosis, promotes a greater understanding within the medical profession, supports research, shares information with the European Network for Ichthyosis (ENI) and other organisations such as FIRST (Foundation for Ichthyosis and Related Skin Types).

We were put in touch with the ISG not long after Alfie was born and we devoured all of the information we could find on their website.  We became members straight away and were sent a pack with all the relevant information in that we needed surrounding ichthyosis and Alfie’s specific type. We were also pleased to see that Birmingham Childrens Hospital had strong links with the ISG. 

Our real connection with the ISG didn’t start until we went to our first family conference the following year.  Fittingly it was the weekend of Alfies 1^st birthday in May 2014 and we made the trip up to Newcastle.  We weren’t really sure what to expect and we weren’t prepared for how bloody lovely everyone was!  Immediately we felt like we were part of a huge family, we felt supported and we felt comfortable enough to ask those questions we hadn’t wanted to before.

We made a ton of new friends.  Emma and her family were the first people we chatted to and we felt welcome straight away. I remember seeing Daniel running around and thinking that he and Alfie will be causing some mayhem together in years to come! I remember spending well over an hour stood in the corridor chatting to Beccy; we had got so deep into conversation that we didn’t realise how long we had been stood there.  It was lovely to meet other families who could offer so much advice and support and who just got it.  We also met Tammy, Max and Josh and later Jane and Jayden.  I’m proud to call Emma, Beccy, Tammy and Jane my friends and fellow #ichthymums.  We are looking forward to this year’s conference in London and celebrating 20 years of the ISG.

Maggie, Mandy and everyone else who manages to organise this family conference year in year out are truly amazing.  The work of the ISG is so important to families and individuals like us and I honestly believe that we would be so lost without their support and hard work.  The trustees are all volunteers and they give up huge amounts of their time to organise family events, attend and speak at conferences and produce all of the information we need as members.  The summer camps that the ISG run for children affected by ichthyosis are also hugely important and they give children that little bit of an escape, lets them meet other children in similar situations to themselves and most importantly lets them have fun in a safe environment; we can’t wait until Alfie is old enough to attend!

The ISG would not be able to exist without donations and fundraising.  They do not receive huge grants as other more well-known charities do.   We try to raise as much and donate as much as we can as members.  If you would like to support the fantastic work that the ISG do, here is a link: https://www.justgiving.com/isg/donate