Oak Knoll Mom Posted April 10, 2008 Share Posted April 10, 2008 I'm just curious. I know it's a fairly rare condition, but in a board this size I know we're not the only family dealing with this. :001_smile: Quote Link to comment Share on other sites More sharing options...
Oak Knoll Mom Posted April 10, 2008 Author Share Posted April 10, 2008 bump Quote Link to comment Share on other sites More sharing options...
Jann in TX Posted April 11, 2008 Share Posted April 11, 2008 I have chronic SEVERE psoriasis--and currently I am off 'treatment' due to needing vaccinations for a trip to Africa this summer. I hope to go back on treatment to reduce the severity before I go--not a good place to be with open wounds. We have friends from college who have a young dd who has ichthyosis. I'm sorry your family is going through this too. We are praying that there will be medical breakthroughs very soon for this and other chronic conditions. (((hugs)) Jann Quote Link to comment Share on other sites More sharing options...
Twinmom Posted April 11, 2008 Share Posted April 11, 2008 We aren't dealing with ichthyosis, but with another rare and severe skin disorder. My DS6 has ectodermal dysplasia, and my twins (his full bio sibs) are carriers. Thank goodness they don't have it as well...it's wickedly expensive to treat and not covered by insurance. Prayers and hugs to your family, Quote Link to comment Share on other sites More sharing options...
Oak Knoll Mom Posted April 12, 2008 Author Share Posted April 12, 2008 I have chronic SEVERE psoriasis Sorry to hear that. I hope you can get your skin healed before your trip! We have friends from college who have a young dd who has ichthyosis. I'm sorry your family is going through this too. We are praying that there will be medical breakthroughs very soon for this and other chronic conditions. Thankfully my boys have x-linked ichthyosis--one of the milder forms. When my dad was a kid, there were no special lotions for him to use, so it really affected his quality of life. However now there are so many great lotions out there that it is more of a slight cosmetic nuisance for my boys than a real problem like it was for my dad. Quote Link to comment Share on other sites More sharing options...
Oak Knoll Mom Posted April 12, 2008 Author Share Posted April 12, 2008 We aren't dealing with ichthyosis, but with another rare and severe skin disorder. My DS6 has ectodermal dysplasia, and my twins (his full bio sibs) are carriers. Thank goodness they don't have it as well...it's wickedly expensive to treat and not covered by insurance. Prayers and hugs to your family, I had never heard of ectodermal dysplasia, so I had to look it up. ((hugs)) Why doesn't insurance cover treatment? That seems so bizarre! Speaking of being carriers, as much as I'd love to have granddaughters one day, I'm hoping my boys all have boys so that x-linked ichthyosis will come to a halt in my family. ((hugs again)) Quote Link to comment Share on other sites More sharing options...
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