Hi, my name is Erin(:

I am currently 14 and a Freshmen in high school.

I was diagnosed with Retinoblastoma when I was 10 or 11, in 4th grade.

So 2005.

It’s very unusual for someone of my age to find it so late, or to even have it.

I was hoping to find someone else maybe who has it, has been a long-term survivor or maybe someone similar to my case..

I really want to know more about it, but there’s not much for me to find because of the rarity of finding at such a late age.

Thanks, God bless you all.


October 26, 2010 by  
Filed under Community, Survivor Stories

  • Leah Shearer

    Hi Erin,

    I hope there is someone on here that might be able to share their experience with you.
    But in any case, I think that it’s likely even if you can’t find someone with the exact same diagnosis you will find lots of people who know what the difficulties and the challenges are like.

    Hugs girl. There are lots of people here for you.

    Leah Shearer
    TLC Program Coordinator

  • Christina Iyengar

    HI there ..
    Well, I am the administrator for the Facebook group site for Retinoblastoma International. And I actually know of another 14 year old who lives in Florida who is a rb survivor. She is a fun girl and I could hook you up. Please go to facebook and look for Retinoblastoma International (group – it has a picture of a little girl) and “like” it. Then post me a message so I can have the other girl contact you directly. If that doesn’t work for you, send me a message on
    I can’t really give contacts out. I would need an official request to ask the other girl to contact you. Sorry.
    There are others as well. I will look forward to hearing from you.


  • Leah Shearer

    Thanks Christina for making this connection for Erin.
    That’s the beauty of the internet…making a very large world smaller (especially when it comes to support.)

    Leah Shearer
    TLC Program Coordinator

  • Nicole

    I’m actually going through diagnosis and treatment right now as an 18 year old.

  • Jade

    Omg I know this was posted years back but I”ll write anyway ;) . My name is jade and I’m a long term survivor of retinoblastoma. I was diagnosed when I was 6 months. It was bilateral so they had to remove one of my eyes but thankfully god saved my other one. I am now 16 years old and in remission :D .

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