Pick a point in your life and write about your challenges or successes.   

I am almost 50 years old and I was born with harlequin ichthyosis. Less than 2 years later my sister was born and she was God’s gift to me as a sister and a friend. She is well and has acted like the older sister even though she is younger. I had a hard time walking but she would hold my hand and say "come on step here it's ok". All through our growing up she played with me when none of the other kids would. She let me brush her long brown hair because I had none. She was my inspiration for doing more than I thought I could. As adults we moved and I went to take care of our grandmother in Hawaii while she got married. We reunited 15 years ago. Now she has fibromyalgia and is learning about living with limitations. Now I am the one beating the path through the forest and holding her hand on this rocky road of being ourselves in broken bodies. We lift each other up when have fallen and cheer each other on in small successes just like when we were kids. Love you sis and thanks for being there! For all the First members I hope you find your life support system and may God Bless you on your journey of life.

How has FIRST impacted your life?

I see how others are struggling and I am painfully empathetic to their situations. I feel what they have gone through and I am praying for a cure. Until then I hope everyone can take it one day at a time, one breath at a time and one smile at a time.

What's Your Story? We'd Love to Hear It!

 

 

 

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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