Who is your support?

    Once receiving a diagnosis of any type of Neutropenia, a severe feeling of isolation sets in.  The statistics are overwhelming.  Likely, you and/or your child/children are the only patients within your hematologist's practice with Neutropenia that isn't chemically induced.  Take some time, let it set in, then get busy!  You are not alone.  You may be the only one or part of a select few in your immediate practice or area with your diagnosis but there are many of us out here.
    Personally for me I could never have imagined the impact of the National Neutropenia Network  (www.neutropenianet.org) and the SCNIR (Severe Chronic Neutropenia International Registry) http://depts.washington.edu/registry/.  At the age of 8 I was part of the second drug study for GCSF, also known as Neupogen.  The NNN and the SCNIR work hand in hand and often provide this drug free of charge.  It will change you and/or your child's life!  Connect there, send emails, make the phone calls, put the info in your physician's hands.  A rare diagnosis often means that the road is narrow, long, lonely, and hard...however, it does not mean that it isn't there.  There are also support groups on social networking sites for parents of neutropenic children and adults with neutropenia.  I am a part of one in particular for parents of neutropenics.  I've found lifelong friends there.  I've found mamas who understand the devastation of Neutropenia.  I've also found mamas/friends who've come to appreciate Neutropenia as I have.  As a parent who has been forced to say good bye too soon at the hands of Neutropenia and a parent who has sat countless nights awake praying over a hospital bed graced by the presence of a neutropenic angel, it could always be worse.  Those hospital admissions that are often more frequent than we'd like are at times some of the most enlightening processes of our lives.  Personally, I've come to be thankful for Neutropenia.  So many sick children, so many horrendous illnesses, so little hope for so many.  I'm thankful that Neutropenia is our only hurdle. 
   All of this said, please don't think that I'm making light of Neutropenia.  It's a hard condition to live with.  It's hard to always stay on top of every little thing.  It's definitely a condition in which the small things matter and add up quickly.  It doesn't offer breaks.  It's 24/7!  It is not impossible!  Hopefully if your life is affected by a form of Neutropenia you have a support team.  If not, I hope the references included here help you see the way a little clearer.  Speaking of support (smile)...thank you for supporting me in my efforts to make Joeli's voice heard.  Thank you for taking time out of your endless list of "small things" to read part of my heart.  Be Blessed!