March = Bleeding Disorder Awareness Month

My daughter and I were both diagnosed with a rare storage pool disorder in 2012. She was four at the time and covered in bruises from learning how to navigate through life as most toddlers do. After a call to social services from a concerned citizen who saw bruises on a child (and her mother) and we decided it was time to get help and some answers.
I'd been having signs of a bleeding disorder my entire life... nose bleeds, unexplained bruising, petechia, extreme bleeding during dental work all of which were always summed up to...."you're just an easy bleeder and bruiser".
A year later, tons of Dr appointments and a half dozen tests and blood draws and we finally got a diagnosis. Platelet Storage Pool Disorder-a bleeding disorder that would keep my daughter from playing any contact sports, require her to be accompanied by an aide on the playground and have a life of restrictions. 
Shortly after our diagnosis I started sharing our story in hopes of finding a treatment plan for those with storage pool disorders, finding others like us and raising awareness of this rare bleeding disorder. Through our journey I've also put a lot of focus on the signs and symptoms associated with being a female with a bleeding disorder and am constantly advocating for the woman of the community. 

What is Platelet Storage Pool Disorder? http://atouchofscarlett.blogspot.com/2016/03/pspd-101-what-is-platelet-storage-pool.html

Here are some links to different pieces I've written

• I've been writing for HFA's Infusing Love blog since 2014. I'm so honored to be amongst such an amazing group of woman sharing our stories about life with a bleeding disorder.    Grandparents Day: http://www.hemophiliafed.org/news-stories/2014/09/infusing-love-grandparents-know-best-2/ 

Taking care of the caregiver: http://www.hemophiliafed.org/news-stories/2014/10/infusing-love-taking-care-of-the-patient-the-caregiver/

Fear of the unknown:http://www.hemophiliafed.org/news-stories/2014/07/infusing-love-fear-of-the-unknown/
Her own protector: http://www.hemophiliafed.org/news-stories/2015/08/infusing-love-her-own-protector/
Physical Fundraising: http://www.hemophiliafed.org/news-stories/2015/05/infusing-love-physical-fundraising/
 An unexpected haven: http://www.hemophiliafed.org/news-stories/2015/02/infusing-love-an-unexpected-haven//

 Thank you to our teachers: http://www.hemophiliafed.org/news-stories/2016/08/infusing-love-thank-you-to-our-teachers/
Growing up so fast: http://www.hemophiliafed.org/news-stories/2016/12/infusing-love-growing-up-so-fast/

• Finding events and meeting others from the community has changed my life. I encourage all affected by a bleeding disorder to find a support group near you. For more stories about Bleeding Disorder Events I've attended please check out . . .

http://atouchofscarlett.blogspot.com/2016/01/to-all-that-helped-take-care-of-my.html (HFNC Family Camp 2016)
http://www.hemophiliafed.org/news-stories/2015/05/infusing-love-physical-fundraising/ (Fundraising/Walk 2015)
http://atouchofscarlett.blogspot.com/2015/04/hfa-symposium-2015-stlouis.html (HFA Symposium 2015)
http://www.hemophiliafed.org/news-stories/2015/02/infusing-love-an-unexpected-haven/ (HFNC Family Camp 2015)
http://atouchofscarlett.blogspot.com/2015/12/tis-season-not-just-holiday-party.html (HFNC Holiday party 2015)
http://atouchofscarlett.blogspot.com/2016/04/hfnc-crab-feed.html (HFNC Crab feed 2016)
http://atouchofscarlett.blogspot.com/2016/02/introducing-hfncs-female-factor-and.html (The Female Factor Paint Party)

• For more stories on raising children, when one of them has a bleeding disorder please check out:

Raising Siblings, when one of them has a special disorder: http://atouchofscarlett.blogspot.com/2013/11/raising-siblings-when-one-of-them-has.html

A Mother's Guilt: http://atouchofscarlett.blogspot.com/2013/12/a-mother-guilt.html

It Takes a Village: http://atouchofscarlett.blogspot.com/2013/12/it-takes-village.html

My little prince, (the non bleeder): http://atouchofscarlett.blogspot.com/2014/01/my-little-prince.html

Family Fun Days-keeping the kids entertained safely: http://atouchofscarlett.blogspot.com/2014/02/family-fun-days.html

My son bites Scarlett: http://atouchofscarlett.blogspot.com/2014/02/no-no-bite.html

The What if's: http://atouchofscarlett.blogspot.com/2014/10/the-what-ifs-of-life-with-bleeding.html

A local flood, fills us with fear: http://atouchofscarlett.blogspot.com/2014/12/flooded-with-fear.html

Call me paranoid, but this is the parent I've become: http://atouchofscarlett.blogspot.com/2014/12/call-me-paranoid-but.html

Scarlett learns to give back: http://atouchofscarlett.blogspot.com/2015/01/the-gift-of-giving.html

Scarlett learns to advocate: http://atouchofscarlett.blogspot.com/2015/10/proudest-momma-on-blockmy-little.html

Becoming her own protector: http://atouchofscarlett.blogspot.com/2015/10/infusing-loveher-own-protector.html

6 things I wish someone had told me:http://atouchofscarlett.blogspot.com/2016/02/6-things-i-wish-someone-had-told-me.html

• I've also been interviewed for several HFA Dateline articles. . . http://hemophiliafed.org/dateline/HFA_Dateline_2016_Q3_Fall/#p=24  http://hemophiliafed.org/dateline/HFA_Dateline_2015_Q2_Summer/#p=26

•  I was interviewed for several pieces in National Hemophilia Foundation's Hemaware . . .

           http://www.hemaware.org/story/battling-bruises
           http://www.hemaware.org/story/rare-finds

• And of course our Wish Trip, inspired some pieces to be written for Make-A-Wish and Give Kids the World. . .                                                                                

http://sf.wish.org/wishes/wish-stories/copy-of-i-wish-to-go/scarlett-disney-world
http://www.gktw.org/blog/our-happy-place/