Living with Hemophilia: There’s Always Hope

Oct 5, 2020 | Patient Blog

There are many ways each of us can choose to view 2020. When you’re living with hemophilia, this view can be warped even more. 

However, if there is one thing we all have in common this year, it’s that each of us has been given a “new story” to live. 

A friend once said that life is oftentimes not difficult, but just hard. This has been a hard year, and for many, that’s an understatement.

It’s in these challenging times when we can so easily become void of hope, faith and motivation. 

Instead, we become filled with fear, doubt and even depression. For so many in the chronic illness community, we find something that so desperately is needed for all who are outside of the community and within.

Inspiration. 

In the latest episode of Patient Services Inc.’s Rare Perspectives podcast, you will find just that.

We invite you to join us for our conversation with Jordan Martin, hemophilia B patient, that will inspire you to “flip the script” on this new story we’ve been given and challenge you to live it to its fullest.

WHO IS JORDAN MARTIN?

Jordan is a 33-year-old living with hemophilia B. Diagnosed at the age of nine, he is a light within the rare disease community. 

Sharing the rare bleeding disorder with his two younger brothers, Jordan is an example of strength, positivity and perseverance. 

Now a head trainer for Orange Theory in Greenville, South Carolina, Jordan returns to the Rare Perspectives podcast to inspire the audience with his unique view on life and how he overcame his diagnosis. 

He never lets hemophilia define him and is so much more than a fitness trainer. 

In this episode, meet your new life coach. 

WHAT IS HEMOPHILIA?

According to the Hemophilia of South Carolina, whose executive director is Jordan’s mother, Suzanne Martin, Hemophilia is defined as:

“…a genetic bleeding disorder that prevents the blood from clotting normally. Certain bleeding episodes, such as brain bleeding, may be life threatening. Hemophilia occurs primarily in males; however, a female may, on occasion, be affected. Women who are carriers of hemophilia may have low factor VIII or IX activity, may be symptomatic and may be considered to have Hemophilia. They can often require the same factor replacement as males during trauma, surgery and childbirth.”

WHAT ARE BLEEDING DISORDERS?

According to the National Hemophilia Foundation, bleeding disorders are a group of disorders that share the inability to form a proper blood clot. 

They are characterized by extended bleeding after injury, surgery, trauma or menstruation. Sometimes the bleeding is spontaneous, without a known or identifiable cause. 

Improper clotting can be caused by defects in blood components such as platelets and/or clotting proteins, also called clotting factors.

The body produces 13 clotting factors. If any of them are defective or deficient, blood clotting is affected; a mild, moderate or severe bleeding disorder can result.

HOW MANY PEOPLE ARE LIVING WITH HEMOPHILIA?

Hemophilia A occurs in 1 in 5,000 live male births. Hemophilia A is about four times as common as hemophilia B. 

The number of people living with hemophilia in the United States is estimated to be about 20,000 individuals. 

The worldwide incidence of hemophilia is not well known, but estimated at more than 400,000 people. 

PATIENT TALKS ABOUT OVERCOMING ADVERSITY AND LIVING WITH HEMOPHILIA 

For Jordan Martin and his family, facing obstacles has been a way of life. But, for this family, obstacles are just another way of saying opportunities. 

Pursuing his dream to be just like his older brother and dad in the world of sports, Jordan faced many challenges along the way. 

Quitting was never an option. With every obstacle, it was met with an attitude that squared up and asked, “How can this make me better and stronger?”

With his diagnosis, Jordan and his brothers were given a new story. 

To hear him talk about living with hemophilia is to listen to a man who fully appreciates life, challenges and all. 

In this unprecedented year we find ourselves in, Jordan has a voice we all need to hear.

“There are so many changes in this time that we’re living in,” Jordan said. “We’ve all had to pivot. We’re all one way or another living a new story. Let’s live it.” 

GIVING BACK IS WHAT THE MARTIN FAMILY DOES

Giving back is paramount to the Martin family. 

As we previously mentioned, Jordan’s mom, Suzanne, is the executive director of the NHF chapter of South Carolina. It’s no surprise that Jordan, too, loves to give back.

As a matter of fact, before sitting down to record the latest episode of Rare Perspectives, Jordan had taught 6 classes at OrangeTheory, beginning at 5 a.m. 

Jordan has also advocated with PSI on Capitol Hill. 

“I was able to speak in front of a group of about 50 Congressmen and women along with some other guest speakers with rare disabilities,” Jordan said. “It’s an absolute honor to be able to go up and especially speak on behalf of PSI and tell them exactly why we’re needing organizations like this.”

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ROCKY BALBOA, A GROWN-UP JORDAN 

In talking with Jordan about movies that inspired him, without doubt and without hesitation, it always comes back to the “Rocky” movies. 

You’ll have to listen to this podcast to find it which Rocky movies are his favorite, but in discussing what they meant to him, Jordan said this:

“It was this guy that was given a shot. He was hungry and he wanted it, and that person came out on top. 

“(He) kept rising and kept rising and defeating odds and overcoming obstacles, and it was just one of those things where it hit. That was the story of Rocky rising above – (as) that underdog. That’s how I always felt growing up. ‘Jordan. you’re the underdog.’” 

Jordan and His Two Twin Brothers

FOR JORDAN, FAMILY IS EVERYTHING

If there is one commonality throughout every conversation we’ve had with Jordan, it is that family is everything. 

Jordan is well aware of the blessing he has within his family. His heart breaks for those facing a chronic illness that may not have the support of a family. 

Family is never something to be taken for granted.

From his brothers and sister to his mom and dad, Jordan speaks affectionately for each of them and this reminds us of the things that matter most in life. 

To close out our conversation with Jordan, we asked him to share a few words for his mom and dad.

A few tears may have been shed at the end of our conversation.

Jordan Martin is a man on mission and his voice is one for such a time as this. Please do yourself a favor, pour yourself a cup of coffee, and press play.

This year, we’ve been given a new story. After listening to Jordan, you’ll be ready to fully embrace and live it. 

WHERE TO LISTEN

If you want to watch or listen to Jordan’s episode on motivation and living with hemophilia, you can watch now on YouTube.

Jordan’s episode of Rare Perspectives is also on all major streaming platforms, including Apple PodcastsSpotify and Google Podcasts. 

Check out the Rare Perspectives website too for more streaming options. 

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