Friday, February 3, 2012

Newly Diagnosed Families

I was recently asked how we deal with talking to newly diagnosed families. This was my response

We come into contact with a lot of newly diagnosed families because of B4SMA. It can be a lot of work, emotionally and physically, to help families get the information they need to make the right decisions for their families. First of all, for your own mental health, remember that you can only help people who want to be helped. Offer up your story, what you know to have been helpful for your family. Give them links to websites that you got your helpful information from (FSMA, SCF, GSF, FightSMA, MFMF, etc). Be sure to share support/supply organizations as well (FSMA Care packages, Cole's Quilts, B4SMA, etc.). Mostly, from personal experience, be prepared for the family not to agree with the path you chose for your family. Should they decide, for example, to use palliative care instead of NIV offer to give them contact information to families who have chosen similar paths. Do not push your beliefs but share openly your experiences, both good and bad. It is not always easy to help but if you are prepared for various situations ,you will be fine.

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