Happy New Year Everyone! I have a networking request that maybe someone could help me with. Does anyone have any connections to the national news shows such as The Today Show, Good Morning America or CBS This Morning? or The Doctors? Im asking because Feb. 28th is known as Rare Disease Day and I was hoping our family could share our daughters rare disease story. For those of you that dont know my daughter Elana, she has a rare, incurable disease called Primary Ciliary Dyskinesia. (PCD). She is 11 years old and has had 31 surgeries and has been hospitalized over 60 times. She takes 6 breathing treatments a day and has chest physical therapy twice a day. She is on a steady stream of antibiotics for her chronic infections. She is losing her hearing and lung function. Currently less than 400 people have been diagnosed with this life altering disease but doctors think as many as 25,000 people have PCD but are misdiagnosed. We would love to share Elanas story on a national level and help bring awareness to this beast of a disease. Thanks!
Posted on: Mon, 05 Jan 2015 15:34:39 +0000
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