Thursday, January 17, 2013

Almost a Month Away from Rare Disease Day

I created this blog almost one year ago, in preparation for Rare Disease Day. Last year I wrote a post about caring for my baby with Harlequin Ichthyosis, to begin to raise awareness in honor of RDD. Rare Disease Day (RDD) is a world-wide event celebrated on the last day of February, to recognize  rare diseases in order to help raise awareness and hope for the future. With hopes that more recognition will come the opportunity for better medical research, treatments and cures. This year’s motto is “Rare disorders without borders”. Yesterday, a friend of mine, who is the author of an amazing blog, was a guest poster on Blessed By Brenna. Carly wrote about her life living with a rare disease, Ichthyosis form Erythroderma/Netherton's Syndrome. She is an incredibly positive woman and has written about her successful life, leaving the message that when Evan grows up he “will be OK’.

Having a positive outlook on life while living with or caring for someone with a rare disease is the best way to live. Having hope for the future and knowing that living a happy life is what is most important. Of course there are days where I’m sure many hit a bump in the road or times might not be completely happy. But those bumps make us stronger and we move forward trying to live without fear or negativity, as best we can.

Having Evan has opened my eyes completely. I live a totally different life now than I did before he was born. In many ways, obviously with the care involved but my outlook on life has changed dramatically. Now, I feel I live a more positive lifestyle. I do not take things for granted, I appreciate the little things, I avoid judging others and feel much stronger as an individual, mother, wife, and friend. I am happy and Evan is happy. Though with this positive outlook on life doesn’t mean I do not have hope for a cure. Because all I could possibly want other than what I already have, is a cure for my boy.

By raising awareness for Rare Diseases, Ichthyosis in particular, is a way to educate others. Educating others is extremely important as it can help avoid misconceptions about those who appear to be ‘different’. “Hope is in our Genes” and you can help raise awareness if you “Wear that you Care- Rare Disease Day 2013”. A friend of mine in the Ichthyosis community has created the event, “Wear that you Care- Rare Disease Day 2013”on Facebook, in hopes to raise awareness and to promote Rare Disease Day and the Global Genes Project. On February 28th wear your "Jeans for Genes" and help raise awareness for rare diseases. Laurie is collecting donations for the FIRST Foundation in honor of this event. I have already made my donation and plan to break out the denim on February 28th! You should too! :-)


1 comment:

  1. Evan seems like a very strong little boy despite having Ichthyosis and is very lucky to have such amazing parents such as yourselves! It is because of children like him and many others who need to be heard we have teamed up with The Global Genes Project! We are doing our part to help out by donating a portion of proceeds for the month of March. Visit or to help us do so. We wish your family the best and a wonderful Rare Disease Day 2013!