We are excited to introduce our first 'Featured Woman' - Tammy Jones! We thank her for all she does for the bleeding disorders community! We asked Tammy a series of questions about herserlf and her incredible story.  Please read to find out more!

1. Where are you from? 

Greenwood, Arkansas

2. What bleeding disorder do you have and when were you first diagnosed?

 In 2000 I was diagnosed with Von Willebrand Disease Type 1, moderate.

3. When and how did you first get involved in the bleeding disorders community?

In 2000, after my youngest daughter struggled with nosebleeds for two years and they became more frequent and longer, I asked the doctor at our yearly checkup if this was normal. She immediately told us she thought it was a bleeding disorder called von Willebrand Disease (VWD) and referred us to a specialist. When we met with the specialist, she shared with me that VWD ran in families and wanted me to take my girls to Children's Hospital in Little Rock, Arkansas to be tested due to the special lab that was needed for proper testing.  ACH would become our HTC. My three daughters and myself were tested and soon diagnosed with von Willebrand disease type 1, moderate.

While in the rotation the social worker came in to visit with us and after a few questions I came to realize I had an early hysterectomy that could have been prevented if I had been diagnosed with VWD earlier. I went through extreme depression after my hysterectomy because I felt my womanhood had been taken away. . Also, now I was distressed to discover that  I was the one who had given VWD to my children and it would be carried on for generations. In 2006 my first grandchild, a boy, was diagnosed with von Willebrand disease type 1, platelet dysfunction. Thankfully the social worker connected me with Ed Kuebler in Houston who invited us to the Women and Girls Retreat. At these retreats, we have learned so much about our disorder and how to help others. Two of my daughters and I have served on the Planning Committee for Gulf States Retreats since 2004. The retreats have grown in the past three years to include eight states and now have a Girls Retreat which my youngest daughter, now 25, is a girl’s camp counselor volunteer.  For this I am thankful.

4. What has kept you involved to this day?

Updated knowledge gained from attending retreats, vendor fairs,   local, state and national conferences.  My motto: Knowledge is Power.

5. When and how did you first get involved in NHF? 

In 2015 I was the recipient of the Anna DeSimone Grant to attend the NHF Annual Meeting in Dallas, Texas as the VonWillebrands Representative.  This was a special privilege for me because Anna is the one who trained me how to go out into our community and share the knowledge of bleeding disorders through the program then called Project Red Flag. Now known as “Victory for Women” This is where my confidence began to share and keep informed in the bleeding disorders community.

6. What is one thing people don’t know about you?

I like to write poetry.

7. What is one thing you wish for women in the bleeding disorders community?

Better knowledge of care.

8: What is one piece of advice you would give a woman who was newly diagnosed with a bleeding disorder?

You define your disorder, Do not let your disorder define you.