February 28, 2018 is Rare Disease Day, Guest Post by Kitty about Icthyosis, February 28, 2018 Gratiana Lovelace (Post #1148)

(reprinted with permission from Kitty’s February 28, 2015 post on Facebook)

The best treatments for any rare disease / disorder are acceptance, friendship, education, love, and respect.

For some, their rare disease is visible.  For others, theirs [illness] goes unnoticed.  We NEVER know what someone is dealing with; how a person’s daily routine may differ from ours.

But those routines and special needs do not define the person.

Jessica [Kitty’s daughter and the mother of her two granddaughters in the picture above with her husband and the girls father Trey] is so much more than a hearing deficiency.  She’s a sister, a daughter, a mama, a wife, a musician, a friend, a teacher, a runner, a joy and a delight.  She is smart and funny, wise and goofy; silly, but knows when it’s time to be serious.  None of these descriptions have anything to do with her need for a hearing device.  Her rare disorder is just something that makes her ear different from mine and yours.  That and that titanium post screwed into her skull that holds her hearing device.  Most people aren’t aware of her rare disease because it not visible unless she pulls her hair up.

Even though Addison’s, JoElla’s and Trey’s (below) rare disease [of Ichthyosis] isn’t hidden, it doesn’t define them either.  Even though they produce skin more rapidly than you or I do; even though it’s something that most people notice right away, there is more to them than a few flakes of skin.  Trey’s quiet, secret smile that always makes me think he is hiding a mother-in-law joke.  Addison’s (left) non-stop chatter and her ability to chase more squirrels than the best bred rat terrier [is legendary].  JoElla’s (right)  quick temper and frank observations—[and a radiant smile].  These descriptions of their character have nothing to do with skin.  Ichthyosis is just something that makes their skin different.

People with a rare disease are still people.  Let’s celebrate life!

Microtia & Atresia

Erythrokeratoderma Variablis (EKV)


Rare Disease Day is celebrated each February 28th (or 29th in leap years)
provides awareness and shares resources around the world (logo below):

Thank you Kitty for your inspiring and educating words!  You have a beautiful family!  And I applaud your forthright advocacy efforts on the part of those affected by Icthyosis and/or hearing loss.


For a previous guest blog post by Kitty with more details about how Icthyosis  impacts the lives of those who have that disease, please visit/click this related post link, here.


About Gratiana Lovelace

Gratiana Lovelace is my nom de plume for my creative writing and blogging. I write romantic stories in different sub genres. The stories just tumble out of me. My resurgence in creative writing occurred when I viewed the BBC miniseries of Elizabeth Gaskell's novel North & South in February 2010. The exquisitely talented British actor portraying the male lead John Thornton in North & South--Richard Crispin Armitage--became my unofficial muse. I have written over 50 script stories about love--some are fan fiction, but most are original stories--that I am just beginning to share with others on private writer sites, and here on my blog. And as you know, my blog here is also relatively new--since August 2011. But, I'm having fun and I hope you enjoy reading my blog essays and my stories. Cheers! Grati ;-> upd 12/18/11
This entry was posted in Beauty, Compassion, Courage, Empowerment, Goodwill, Gratiana Lovelace, Guest Post, Ichthyosis, Illness, Kindness, Medical, rare disease, Respect, Wild Card Wednesday and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

3 Responses to February 28, 2018 is Rare Disease Day, Guest Post by Kitty about Icthyosis, February 28, 2018 Gratiana Lovelace (Post #1148)

  1. Kitty says:

    Thanks, G, for joining us in celebrating life!

    Liked by 1 person

    • Hi Kitty,
      You’re most welcome! I appreciate your dedication to educating and informing others about being more aware of rare diseases such as Ichthyosis and the daily challenges those who have it face–not only the symptoms of the disease, but also some people’s uninformed reaction to it. You and your family are an inspiration for others.

      And I hope that cures are someday found for rare diseases such as Ichthyosis. In the meantime, may we all be considerate and compassionate toward others who face rare disease challenges.
      Hugs & Love! Grati ;->


  2. February 28, 2018–Thanks for liking post #1148 about Rare Disease Day! I’m glad that you enjoyed it! Cheers! Grati ;->

    Evie Arl & SueBC


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