I’m wondering is there is anyone else here from the UK? It would be great...
Greetings Bleeding Disorder Patients,
I was diagnosed with VWD 16 years ago along with my three daughters. My grandson was also diagnosed with VWD shortly after birth. So I live with five patients one being ME. My passion from day 1 of diagnosis was to advocate for my girls so they would not suffer as I had growing up without a diagnosis and being told "THATS NORMAL," just elevate your feet. As I sat in the HTC office that day and found out I was a carrier and I also have VWD, so many things became clear to me. I was determined; no one should struggle the way I had growing up with bruising I could not explain, heavy cycles, and gum and nose bleeds. So I set a path to become involved as much as possible to bring awareness to my state about how to care for and treat others with a bleeding disorder. I began my awareness and advocacy. To date my daughters and I have reached all local hospital emergency rooms, doctors' offices, local dentists, EMTs, First Responders, and emergency response teams in 9 counties. We take every advantage possible to set up informational tables in our community, at city fairs, health fairs, Ladies Night Outs, etc. I share this to show growth.
In March 2018, we are hosting a Walk/Run fundraiser to bring awareness and advocate even further. This will be our 1st annual event, and I hope to grow it each year moving forward we call it "Running Red." My family and I, affected and unaffected wanted to take awareness to a new level. I am excited about the future for our Awareness and Advocacy moving forward.
We are preparing for 150 walkers/runners. But I will be happy for any number this year and elated if we reach this goal. Our volunteers helping plan this event are not affected! They are helping because of their knowledge of our bleeding disorder and willingness to learn and support us. Sharing your story is vital.
Blessings to my partners in living with a Bleeding Disorder.
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