29 May 2013

Ichthyosis Awareness Month: Larisa's story ~ "People probably think I should be defeated. Maybe because they would be?"

Something that has struck me with this Ichthyosis Awareness Month blog project is the 'coming of age' realisations that people have experienced. They may not have always accepted their Ichthyosis and visibly different appearances (and that's ok), but there comes a point where they make a decision of self acceptance. Larisa writes "I finally stopped wasting my time trying to fix what I was genetically given." She has made a conscious choice to be positive about her Netherton's Syndrome - and this attitude and perspective is admirable. Larisa used to blog and I'm hoping this piece of writing is the start of a rekindling. Her photos exude confidence. Her words are pretty amazing too.


"Denial. You wouldn’t think denial could be so much a part of my life with the very noticeable skin disease with a name I still don’t even like saying—Ichthyosis. It just sounds icky? Many people probably think it is. Throughout my life I have always ignored the obvious, that something was different about me in comparison to my parents, younger brother, and peers. It was hard to not always think “why me?” and that life wasn’t fair. Honestly, I still don’t think it is. But I do think I wouldn’t have been given this disease if I couldn’t handle it. I know many people wouldn’t be able to, so the fact that I can is an accomplishment in itself. I have always just wanted to be labeled “normal” instead of “unique” and I can definitely go the rest of my life without hearing “well, you’re still pretty.” But these comments most people don’t receive have helped me become a stronger person. I have been years beyond my maturity ever since I can remember. I have overcome obstacles nobody will even have the chance to overcome. But I have also met many people through my story. It’s a conversation starter. People want to know why I am not acting like I’m in pain, why I have a smile on my face, why I have enough confidence to be openly sarcastic. People probably think I should be defeated. Maybe because they would be?

Half the time I don’t even remember I have Ichthyosis. I don’t think it comes into play for me until someone brings it up, or because I have become discriminated against in some way. Honestly, I don’t really bring it up myself. I feel like I shouldn’t have to. I don’t think it defines me. I think it defines other people’s perceptions. With this disease, you become a real life exhibit for eager doctors. Doctors who pretend like observing you will lead to a cure, doctors who come in groups of 40 and poke and prod you to pass residency. After years of believing them, I finally stopped wasting my time trying to fix what I was genetically given. I now choose to live for normal goals. Passing classes, getting a job I love, finding friends who make me a better person. Things that matter. Ichthyosis to me just doesn’t. Not anymore.


Years ago, my mom forced me to go to a camp for kids with skin diseases. Being in denial, I battled with her decision to make me attend, but after that experience I realized I didn’t need to be in denial so much. Those people embraced their differences. They made lifelong friends over it! They had opportunities only possible for people like us. That experience was so rewarding and changed my outlook on life forever. Some of those children (who I later became a counselor for) had the most amazing spirits under the most extreme situations. Some of them literally had to plan every activity in their day around their disease and yet there I was denying mine. I’ll admit, it is much easier to talk about this to my friends from camp than anyone else. I guess I just assume nobody will understand. I don’t want to be categorized in the genre of “disease.” I am more than that. But I think most people let their flaws define them. Whether it is being overweight, being short, being unathletic… it’s amazing to me how much these matters affect a person’s every day life. I truly believe having Ichthyosis has made me not plan my life around what I’m afraid of. Instead of thinking a job won’t hire me because of my disease, I go into it with optimism.

It’s funny how something originally giving you low self-esteem can become the reason to have confidence later on. I can’t explain it really, but I know in a sense I view life with a different perspective. I am able to be proud of my accomplishments because I know I overcame the possibility of discrimination. When I realize how much Ichthyosis has helped me grow as a person, it’s hard not to be a little grateful for it. There is always going to be something you don’t like about yourself. If it weren’t this disease, it would be something else you wish you could change. But that’s life. And this is something we are forced to overcome because if we didn’t, we would be letting Ichthyosis define us instead of us defining Ichthyosis. And that is exactly what it wants from us."

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.



  1. Hi Larisa, I really related to your perception of life on 3 fronts.
    1) Pain - people often say to me "isn't it painful to which I honestly have to think about it for a moment, then replying "oh it can be but mostly not"
    2) waiting for cures - My mother often rings me when she sees some documentary or story about some breakthrough in skin science, and I say to her "Mum, I don't care, I am not hanging out for a cure, I am fine as I am", and it annoys me because it makes me feel like she can't accept me the way I am.
    3) 'wise beyond your years' - I was always told this, and first so, when i was 5 years old, by my Pediatritian - he said to Mum "Pauline is a very strong and wise little girl for her age".

    I also looooved your photos Larisa, they certainly do "exude confidence" as Carly said... just lovely stuff and backdrops.

    All the best for the rest of your journey Larisa, I have no doubt you will do well

    Love Pauline (EHK Ichthysis)

    1. Hi Pauline,
      I thank you so much for your comment, I'm glad you can relate to it on those three levels. I was hoping this represented most of the people who experience this disease since it is a tough subject and we all have different perceptions, feelings, and beliefs about it. It makes it hard to represent it in a way which doesn't offend anyone else with this and doesn't misrepresent to people who don't know much about it. I am thinking many want to seek out a cure for it and care that they have it which I felt like I was in the minority for speaking about. I sometimes feel guilty I don't advocate it or try and inform people about it (such as what Carly does so well). But to me, information is not going to get us a cure, and it is only causing us to think about it more and as you responded, you don't really think about it until you're reminded. I like not thinking about it because I want to think about everything that plays a much bigger importance on my life. Thank you for the compliments, and I love how your stories are in sync with mine :)

  2. That sparkle in your eyes makes me think of our Addison. I would be willing to bet you communicate in giggles like she does. I love your attitude. Thanks so much for sharing your story.


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