Telling Your Story

Horizons in Hemophlia, October 2011

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

“Hemophilia? That’s something with the blood?”

You’ve heard the question a million times.  You may have even come to dread having to explain it over and over. But there is no escaping the question when your family has a rare disorder that few people know much about.  What’s even worse?  What they think they know is usually wrong:  “Just a small cut is life-threatening, right?  You can quickly bleed to death?”

At this year’s HoG Spring and Fall Family Camps, families strategized ways to educate others about bleeding disorders.  The families put 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 hemophilia:  “Hemophilia is a rare disorder where a person’s blood doesn’t clot normally.  The problem is not bleeding from small cuts and scrapes, but bleeding inside the body, especially in joints like knees, ankles, and elbows.  A person is born with hemophilia – it’s not contagious – and will have it his whole life.  There’s no cure, but there is treatment and a person with hemophilia can expect to live a near normal life.”  This statement gets the main points across and dispels the myths.  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:

• Hemophilia is a genetic disorder that affects almost exclusively men.  Women can be carriers of the disorder.
  
• The problem with hemophilia is that there is not enough of a particular protein in the blood.  This protein is necessary for blood clotting.
  
• Hemophilia is classified as mild, moderate, or severe based on how much of the protein is in the blood.  The severe form is the most common.
  
• The treatment for hemophilia is to inject the missing protein into the blood.  Most children do this two to three times a week to prevent bleeding.  Adults may only do this after bleeding happens.
  
• The medicine to treat hemophilia is very expensive.  It can cost $300,000 a year or more.

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:

• It is possible for a woman to have hemophilia if her father has the disorder and her mother is a carrier.  This is extremely rare.
  
• Hemophilia was called the “royal disease” because Queen Victoria was a carrier who passed the gene on to her daughters who married into other royal families.  In fact, hemophilia is found worldwide in all types of people.
  
• There are about 18,000 people in the United States who have hemophilia.

The “facts” make up only part of your hemophilia story.  The other part is your family’s particular experience with the disorder.  Sharing what it is like to have bleeding in your knee, or having to give your child an injection three mornings a week, or your difficulty in finding insurance may be what people remember the most.  It may also spur them to become supporters of the hemophilia community.

Hemophilia of Georgia would like to hear your story.  We often get media requests from 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?”

So what about people who have von Willebrand Disease or platelet disorders?  Read about sharing your experiences in next month’s HoG newsletter.