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  • Hello!

    Hi, I am Chris and I have been dealing with Ocular Graft Versus Host Disease (chronic dry eye) since 2003, as a side effect from a very successful allogeneic stem cell transplant, that I had in 2002, for acute myeloid leukemia.

    Currently I am wearing CIBA brand soft contact lenses since the Fall of 2013, and although they require constant lubrication to keep them in, my corneas feel better most of the time. I also wear my Wiley X glasses during the day as much as possible, for some wind relief.

    Up until last Fall, I have tried the following procedures/products to no avail (punctal plugs, autologous serum drops, and Restasis), and recently had both lower lid tear ducts cauterized. In 2006, I looked into going to Boston for their PROSE treatment, however the limited medical plan coverage in Canada, left me in limbo.

    My quality of life is somewhat on hold, as I constantly suffer from constant eye pain, irritation and light sensitivity, so my indoor/outdoor activities are very limited.

    I am now looking into developing a new extended relief dry eye solution, that I would like to engage the dry eye forum members in discussion/feedback regarding how you currently deal with your condition, as well as giving you the option to participate in a short dry eye survey, that I will be posting on the forum shortly, so feel free to contact me any time here to discuss the survey. Thank you.

  • #2
    Good morning, Chris - good news that your eyes feel better after all that. Are there no other large scleral lenses in Canada? (we are UK and it's not easy to access here either except in specialist eye hospitals, sometimes the keratoconus groups can help us find lens specialists). There are at least 3 more GVHD patients on the Facebook Closed Group Dryeyetalk https://www.facebook.com/groups/dryeyetalk/ if you want to extend your reach. Best wishes.
    Paediatric ocular rosacea ~ primum non nocere

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    • #3
      Thanks for the reply littlemermaid. My specialist knows about and can fit scleral lenses, however the few patients that are using them are not having much relief at this time. I'm using the soft contacts as a form of bandage, to heal my corneas, from years of scarring and battling with blepharitis. The good news re. my blepharitis, is that it has subsided a lot from using Lacrilube when my lenses are out. I will check out the Facebook link to!

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