Building Awareness

Over the past two months I have been juggling college work with shedding light on the rare disease LCH. I prefer to keep busy, trying to complete more than one task at the one time, as if I am left unoccupied I start to over think about my situation, resulting in bad thoughts, becoming a recluse and feeling depressed, which can sometimes lead to harmful or fatal thoughts.

My attempts to raise awareness so far have been pretty successful, leading to both a print article published and an appearance on tv to talk about this rare disease. Both which were initiated by me, through media contacts I made through college (studying journalism does have its perks 😉 )

My article was published on The Journal on Saturday 23rd of November, receiving over 26,000 views. My article caused quiet the commotion, with mostly positive but a few negative comments too

I featured on Irish national TV station RTE1′ s Morning Edition on Monday 16th of December, with a chance to talk about my struggles with LCH (31 minutes in.)

This disease has spent far too long hiding in the shadows, “not common enough” to receive the awareness and research desperately needed for a cure. I am determined to continue to spread the word and create the awareness this life changing disease needs. Research mightn’t be seen as “important enough” to those with no connection to anyone effected. But for me, a guaranteed cure for ND CNS LCH would mean more than anyone can ever begin to explain.

One thought on “Building Awareness

  1. I have a wordpress site on something totally unrelated but decided to search NDI or diabetes insipidus and stumbled upon your post. I have a son who was diagnosed at age of 8 mos with NDI and up until that point we thought he would not make it. I hear you about getting the word out about diseases that are rare and not really researched. I feel that the only way that some type of cure or better treatment will happen is only by accident. So keep up the good work and thank you! Have a Happy and Healthy New Year!

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