By raising awareness of what we do in the national and local press we can reach more people. We rely on personal stories to help us engage readers around our cause and bring stories of living with ichthyosis to life. Your story can encourage those who see it to get support, or may inspire them to donate or fundraise for us. Some people who’ve shared their story find it a cathartic experience. It makes them feel good to give something back. Journalists regularly contact us asking for individuals and families who are willing to tell their story through the media. Freelance journalists, some of who we have worked with in the past have previously published stories about ISG members. Participants are often paid and some will also receive a set of professional photos. The aim is to get stories into the national newspapers but otherwise they will appear in women’s magazines. If you are interested in talking to journalists and telling your story please let us know so we can pass your details on when opportunities arise. The ISG have no control over what journalists publish. If you are not comfortable talking to the journalist you may withdraw at any time. Thank you for taking the time to share your experiences by completing this form. Please answer the following questions so journalists can fully understand your experience of living with ichthyosis. We ask for your details in order to contact you for more information about sharing your story. Questions marked with an asterisk (*) are mandatory.
What’s your story? This is your opportunity to tell your story of living with ichthyosis. Please give an overview of your experience so people can fully understand what you’ve been through, or go through on a daily basis. You may like to think about symptoms, diagnosis, the impact of having ichthyosis at different times of your or your child’s life. Does ichthyosis cause any everyday problems or issues? Does ichthyosis affect the decisions you make in life? Please describe the positive and not so positive things. How has the Ichthyosis Support Group helped you? (500 approx)
By providing your details you are consenting to them being shared with journalists who express an interest in your ichthyosis story. No personal details can be made publicly available by the journalists without your consent. For details on how the ISG use and retain your personal information please read our privacy below at the bottom of our website.