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What is hemophilia?

January 2022 | Paragon Healthcare
Hemophilia is a disorder that affects your blood’s ability to clot. Read the full article to learn the challenges and solutions available to bleeding disorder patients and their families.
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Imagine that Brandon is an active child of two, almost three, years old. He loves to run around and play. He loves making messes. He loves everything else most young children do. Up to now, Brandon and his parents have been lucky. Even while learning to walk, Brandon has only ever fallen on cushioned surfaces. He’s never experienced a serious cut or bruise.

Brandon’s situation changes rapidly. He falls on the pavement – hitting his left knee hard – while getting mail with his mom one day. He cries, of course, and for the rest of the day he doesn’t want to put any weight on that leg. But two, three, even four days later, walking on his left leg is still very painful.

Brandon’s parents take him to the doctor. The doctor refers them to a specialist known as a “hematologist,” a blood doctor. Just a few tests later, the family has a diagnosis: hemophilia.

Receiving a diagnosis of hemophilia can be scary. The name even sounds a little intimidating. Then you learn the disease is lifelong and incurable, and the future can feel even more uncertain. For Brandon’s family, and families like them, hemophilia seems like it closes many doors. If left untreated, basic activities like sports and simply playing outside can be risky. Everything seems to need extra care.

The good news is that hemophilia can be understood. The better news still is that hemophilia can be treated. Recent medical advancements have made treating hemophilia safer and easier than ever before. Treatment can give you back the freedom to live the most fulfilling life possible.

Let’s first learn a bit more about the condition. Then, we can learn how Paragon can help families like Brandon’s and yours.

What is hemophilia?

Hemophilia is a disorder that affects your blood’s ability to clot. In a clot, blood thickens and forms a protective barrier so the injury can heal. Blood clotting uses proteins called clotting factors.

For someone with hemophilia, some of these proteins are deficient or missing. The blood can’t clot correctly, so even minor injuries can cause a bleed. Those bleeds can take a long time to heal.

Joint bleeds – like Brandon’s – happen when uncontrolled bleeding occurs in a joint. These typically happen in joints that are more likely to get bumped, like:

  • knees
  • elbows
  • wrists, and
  • ankles

If untreated, joint bleeds can cause lasting injuries. These injuries can severely limit a person’s mobility.

Who gets hemophilia?

Hemophilia comes in four main forms:

  • Hemophilia A (Factor VIII deficiency)
  • Hemophilia B (Factor IX deficiency, also called Christmas Disease)
  • Hemophilia C (Factor XI deficiency)

Most cases of hemophilia are genetic and passed from parents. Genetic hemophilia can pass on even if neither parent has the disease, as with Brandon’s parents. Hemophilia A and B affect men more than women. Even so, men and women are both able to fully develop hemophilia. Hemophilia can develop later in life due to another disease or random mutation. However, developed hemophilia is even rarer than the genetic disease.

Hemophilia is still considered a rare disease. No forms of the disease affect more than one in several thousand people.

How is hemophilia treated?

Treatment is vital for most hemophiliacs, and families dealing with a hemophilia diagnosis may be understandably worried the disease will affect their everyday life. Fortunately, it doesn’t have to. Many years ago, a hemophilia diagnosis would mean a shortened, painful life. Today, lab-created clotting factor makes treatment, freedom, and a near-normal life expectancy possible.

Patients work with their hematologist to determine an ideal infusion schedule. Some patients may infuse factor regularly. Those who play sports, work physical jobs, or just want constant peace of mind may prefer this option. Other patients may decide to infuse when they sustain an injury. Others infuse before activities that come with a risk of injury.

Whatever you and your doctor decide, Paragon is here to help.

Treatment with Paragon

At Paragon, we hear stories like Brandon’s every day. Patients and their families coping with a hemophilia diagnosis are our family. It’s our privilege to support their journeys toward freedom and health.

Everything we do at Paragon puts our patients at the center. Our operations, our priorities, and our network of home infusion professionals all have you in mind. When you choose Paragon for your factor infusions, you can trust that we care about the same things you do.

We understand how hard a lifelong diagnosis can be. We’re here to support you through every aspect of bleeding disorder management. We’re proud to provide more than just factor infusions. Our patients can also enjoy the benefits of:

  • community support groups
  • patient education resources
  • conferences, and
  • partnerships with major hemophilia support organizations across the country

A lifelong diagnosis also comes with a hefty financial burden for most families. Hemophilia is no exception. We understand, and we’re here to help with that too. Our billing department shares our patient-first mission. We work hard with your insurance providers to get your treatments covered. Even when coverage is a concern, we will do whatever we can to resolve the issue. We’re your advocate throughout your treatment process.

If you’re interested in joining us or learning more, contact us today. You can also let your doctor know you want to join the Paragon family. Every hemophilia patient deserves an infusion provider that knows their name and story. Come see what a difference it can make.

What is hemophilia?

Hemophilia is a disorder that affects your blood’s ability to clot. Read the full article to learn the challenges and solutions available to bleeding disorder patients and their families.

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The Paragon Healthcare, Inc. blog provides general information and discussions about health and related subjects. The information and other content provided in this blog, or in any linked materials, are not intended and should not be construed as medical advice, nor is the information a substitute for professional medical expertise or treatment. If you or someone you know has a medical concern, you should consult with your health care provider or seek professional medical treatment. Never disregard professional medical advice or delay in seeking professional treatment because of something that you have read on this blog or in any linked materials. If you think you may have a medical emergency, call your doctor or emergency services immediately. The opinions and views expressed on this blog and website have no relation to those of any academic, hospital, health practice, or other institution.
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