Ichthyosis Awareness Month: Kelly's story. "I live life to the fullest! I view life with a different perspective."

Kelly got in contact with me on Instagram. I love how many people with Ichthyosis find each other through a picture and hashtag. She loves life - travelling, socialising, exercising, and spending time with her friends. When we first met on social media last year, she was about to travel to Australia. I love seeing her updates! She's embracing life so much! Read her blog here. Kelly has KID Syndrome which she explains below.

Meet Kelly.

"My name is Kelly Gorman and I was born with K.I.D Syndrome.

‘Keratitis Ichthyosis Deafness syndrome is a very rare, inherited, multi-system disorder. It is characterized by defects of the surface of the corneas (keratitis); red, rough, thickened plaques of skin (erythrokeratoderma); and sensorineural deafness or severe hearing impairment’.

I am 26 years old and live in Northern Ireland, UK.

No one in my family have K.I.D syndrome, so that make me very rare. I do like the idea of being rare and unique. I stand out a lot but not just from the fact that I have K.I.D syndrome, it’s because I LOVE life and would try to do everything I want to do and try to break down any barriers that could come up.

Hobbies: Weight lifting, travelling and volunteering. I also love to read and write. I used to write stories and poetry. One of my poems was published in one of my hometown newspaper. Also I’m an adrenaline junkie, a certain parent hates that! I’m a party animal and love dancing when I’ve got booze in me! I even got awards for ‘Child of Courage’, aged 16 and ‘Adult Achievement’ aged 18.

Growing up were good and bad. I had been bullied a lot because of what I look like. But because of my deafness, I didn’t know what had been said – which is a good thing back then. But then I learnt to lip-read and soon got smart. I communicate via British Sign Language and get on with both deaf and hearing people well. I’m a people person, which help as I’ve been told I’m so friendly people soon forget about my syndrome.

Challenges I've faced have been staring and bullying. When I was younger, people always stared at me wherever I go. I understand children are always curious but adults can be so nasty. I’m thankful things are better now and there’s not much staring. I soon developed thick skin and got armed with smart comebacks if needed but at the moment, things are great. More people are accepting now. I’m very headstrong and people know that.

But I had more challenges when I got older, in my teens. I learnt ‘boys’ like good-looking girls and I wasn’t one of them. That hurt but as I have always hung around with guys I was considered as a cool funny girl who always help them with getting girls. How funny is that. I soon grew up and learnt that real men like ladies who have great personality. Dated many different men over the years and learnt a lot, a lot!! I admit that before I got wiser, I was worried about how guys would feel about my skin because they do flake now & then and get greasy depend on what lotion/cream I use. Certain men have taught me a lot and told me that they won’t care about my skin if they really like me. They soon woke me up and I then got bigheaded when I get good comments about my looks- long hair (wig!), tall, slim and a tan (when I get one). So thankfully over the years I have become more confident in myself and happy to educate people about my syndrome.

On my bad days I do get embarrassed about how I look if I wake up with badly dry skin or horrible spots when there’s someone with me. Or wish there were a cure if I was in so much pain with my skin when it’s wintertime.

I work with children, have been for 8+ years so I do get stares and questions but children are just curious. Adults can be rude sometimes but I feel it has gotten better over the years. It’s just a matter of educating them when they ask questions. I’m heavily involved in charity work so I’m used to raising awareness and have heard many questions over the years. I get asked to do interviews or public speaking because people know I’m confident but that wasn’t the case years ago.

For years and years people knew me as the girl with K.I.D syndrome but now, I am happy to be known as crazy and unique girl who do what she want. Most of the time, I forget I have K.I.D syndrome until people ask me what has happened to my face or when my skin get painful from the cold.

Growing up with my K.I.D syndrome isn’t easy but I make the most of my life! I believe I am really lucky having done what I’ve done in my life so far, I feel having K.I.D syndrome has made me luckier and I really appreciate that my skin is really good compared to when I was younger but still get unexplained rashes now and then. I have love, family, health, work and friends. And many more! I live life to the fullest! I view life with a different perspective."

May is Ichthyosis Awareness Month - I am sharing stories of people who have experienced Ichthyosis. Read all stories in the Ichthyosis Awareness Month Blog Project here.