Telling Your Story – Part Two

Horizons in Hemophilia, November 2011

By Jeff Cornett RN MSN, Director of Training, Research, & Advocacy

In our October 2011 newsletter, we discussed ways people with hemophilia and their family members can explain their disorder to others.  This month, we’ll do the same thing for those with von Willebrand Disease (VWD).

Most people have at least heard of hemophilia.  The same can’t be said for von Willebrand Disease.  It is not widely known, even among health care providers.  A person with VWD can expect to have to explain the disorder every time.

At this year’s HoG Spring and Fall Family Camps, families strategized ways to educate others about bleeding disorders.  The families categorized facts about bleeding disorders into three categories:  “Need to Know,” “Good to Know,” and “Interesting to Know.”  They also listed common myths about bleeding disorders that need to be corrected.  From those lists, each person created an “elevator speech” for his or her particular disorder.  An elevator speech is one that can get the main points across in the time it would take for a typical elevator ride – less than a minute and a half.

Here’s an example of an elevator speech for Von Willebrand Disease:
“Von Willebrand Disease is a disorder of the blood.  Because of the long name, we usually just say ‘VWD’.  A person with VWD can bruise easily and have frequent nosebleeds.  People are born with VWD – it’s not contagious – and will have it their whole lives.  There’s no cure, but there is treatment so a person with VWD can expect to live a near normal life.”

This statement gets the main points across about VWD.  It is a good starting point with casual acquaintances.  If they want to know more, they’ll ask. You’ll probably want the people with whom you have an on-going relationship to know more about your disorder.  That’s where the “Good to Know” points come in.

Here are some of the facts the families put under this category:

• Von Willebrand Disease is believed to be the most common bleeding disorder, affecting 1 in every 100 people.
• Von Willebrand Disease occurs in both men and women.
• There are different types of von Willebrand Disease, based on whether there is not enough VWD protein in the blood or if the VWD protein doesn’t work correctly.  The symptoms can be mild to severe.
• Women who have von Willebrand Disease can have heavy, prolonged periods (menstrual flow).
• Treatments for von Willebrand Disease include a nasal spray or, for the most severe forms, injections.

Of course, there are other facts that can be added to the “Good to Know” list.  You probably should avoid telling all of these to someone at one time – they are not easy to understand and are a lot to remember.

“Interesting to Know” facts are the “spice” of your presentation.  They can make it more enjoyable and memorable but should be used sparingly.  Some of these are:

• Von Willebrand Disease is named for the physician who first described it.
• Von Willebrand Disease is the most common bleeding disorder in dogs.

The “facts” make up only part of your story.  The other part is your family’s particular experience with VWD.  Sharing what it is like dealing with nose bleeds, bruises, and heavy periods may be what people remember the most.  It may also spur them to become supporters of the bleeding disorder community.

Hemophilia of Georgia would like to hear your story.  We often get media requests – reporters looking for families to interview.  We also need people to tell their stories to legislators and other elected officials.  Your story may be selected to share in our newsletter or on our blog.  We’ll even help you put your story together.  Start by talking to your HoG Outreach Nurse or Social Worker or email us at mail@hog.org.

However you choose to share your story, you’ll find it easier to do if you think about the facts – the Need to Knows, the Good to Knows, and the Interesting to Knows – and add your personal experiences.  Write it down and practice.  Then you’ll be prepared the next time someone asks, “Why do you wear that MedicAlert® bracelet?”