Advertising
Advertising

Bleeding Disorder: 9 Things People With Hemophilia Want To Tell You

Bleeding Disorder: 9 Things People With Hemophilia Want To Tell You

Hemophilia is quite a rare disease and about 20,000 people in the US suffer from it. This may explain why there is so much ignorance and misinformation going around. If this were rectified, people could start donating more to the haemophilia charities and also be more empathetic towards people who suffer from this rather troubling disease.

Basically, hemophiliacs suffer from a clotting deficiency. The clotting factor is a type of protein and treatment tries to replace this. This means that when bleeding occurs, it may be impossible to stop it because the platelets which are normally released to help plug the leak are non existent. The patient will suffer severe blood loss which can be life threatening.

Here are 9 things we hemophiliacs would like you to know.

1. We are not going to bleed to death because of a minor cut

Lots of people trot this one out. In Israel, hemophiliacs are warned not to give their loved ones a rose as a prick from the thorn might cause them to bleed to death! The truth is that the real danger comes from internal bleeding where a bruise or trauma might cause blood to damage the joints and internal organs. Hemophiliacs know the danger signs because they have had all the instructions form their HTC (Hemophiliac Treatment Center) to treat minor injuries at home.

Advertising

“Hemophilia and incest are not related in any way… Also, we won’t bleed to death from a paper cut.” – Jeff Johnson

2. We hope all medical staff are well informed

When accidents happen, we may find ourselves in hospital. There is no guarantee that medical staff are trained in hemophilia. I know one man who had to wait for 3 hours to get a shaving kit because the paramedic had to check with his superiors that it was safe to give him a razor. He was not sure if he was at risk or not!

3. We let our children play games and sports

Most people are convinced that sports and rough play might cause severe bruising and lead to certain death. This is not the whole story. We will not let our children who have hemophilia do full contact sports such as wrestling, rugby and boxing, for example. Other sports such as basketball, soccer and swimming are quite safe. Precautions are taken to ensure kids have head protection and padding for their joints. As an extra safety measure, a child can receive a preventive dose of clotting factor before going on the field.

We know that strong muscles will protect the joints and also prevent obesity which could put a strain on them. This is why we encourage our children to do sports within the safety limits.

Advertising

4. We want to be hugged

Many people are scared to death of touching us because they might hurt or bruise us which could cause internal bleeding. This is rubbish as there is no danger from this type of contact. We want to be hugged, cuddled, and receive affection, just like anybody else.

5. We want to live a long and healthy life

The only problem with this is that there is as yet no cure for hemophilia but we are always optimistic. Giant strides have been made as the life expectancy of a hemophiliac is pretty much in the normal range now, provided they have access to treatment. In 1950, life expectancy for a hemophiliac was 16.5 years.

6. We probably inherited the disease

It is not a given that hemophilia is entirely genetic. Normally, it is passed through the genes and women are the carriers. Queen Victoria was a carrier and this is why hemophilia is sometimes called the “royal disease.” However, there are about 30% of cases where a gene mutation with no family history of the disease occurred.

If a man suffers from hemophilia, he cannot pass the gene to his son. It is usually the daughters who are the carriers and they have a one in four chance of bearing a haemophiliac child.

Advertising

7. We are not going to give you AIDS

It is amazing that this one is still going the rounds as the last known infected case from contaminated blood in the USA was in 1986! There were cases of HIV infection between 1978 and 1985 when infected blood was used for some transfusions. Now the blood supply is much safer and there are synthetic treatments which do not use human blood at all.

8. We are trying to get more women involved in getting diagnosed

Many women who actually have hemophilia go undiagnosed as there are complications caused by pregnancy, menstruation and giving birth. There are doctors who are not sufficiently up to speed on bleeding disorders in women. This means that many women remain undiagnosed and are not receiving the appropriate treatment. If you want to help with this cause, check out the site Victory for Women (V4W) here.

9. We need more funds for research and treatment

Research is ongoing but the cost of treating a person with a factor replacement therapy can cost up to $1,700 a dose. Calculate that a person may need an intravenous infusion three times a week for the rest of his life and you see how enormously expensive this treatment has become. You can learn about present research and donate to the National Hemophilia Foundation.

We know that the research on gene therapy is holding out great promise and we look forward to the decisive breakthrough which will transform our lives. We will never lose hope.

Advertising

“Hope is being able to see that there is light despite all of the darkness.”- Desmond Tutu

Featured photo credit: Body map view to show the bleeding area/Michael Schultz via flickr.com

More by this author

Robert Locke

Author of Ziger the Tiger Stories, a health enthusiast specializing in relationships, life improvement and mental health.

What Your Fear of Being Alone Is Really About and How to Get over It Work Smarter, Not Harder: 12 Ways to Work Smart 10 Reasons Why People Are Unmotivated (And How to Be Motivated) 12 Secrets To a Super Productive Meeting You Should Know 10 Simple Morning Exercises That Will Make You Feel Great All Day

Trending in Health

1 How Many Hours of Sleep Do I Need? (What the Science Says) 2 How to Sleep Through the Night and Get Good Rest 3 How to Eat Healthy on a Budget (The Definitive Guide) 4 20 Best Guided Meditations for Sleep and Insomnia 5 8 Home Remedies to Get Rid of Constipation

Read Next

Advertising
Advertising
Advertising

Last Updated on January 21, 2020

The Best Way to Create a Vision for the Life You Want

The Best Way to Create a Vision for the Life You Want

Creating a vision for your life might seem like a frivolous, fantastical waste of time, but it’s not: creating a compelling vision of the life you want is actually one of the most effective strategies for achieving the life of your dreams. Perhaps the best way to look at the concept of a life vision is as a compass to help guide you to take the best actions and make the right choices that help propel you toward your best life.

your vision of where or who you want to be is the greatest asset you have

    Why You Need a Vision

    Experts and life success stories support the idea that with a vision in mind, you are more likely to succeed far beyond what you could otherwise achieve without a clear vision. Think of crafting your life vision as mapping a path to your personal and professional dreams. Life satisfaction and personal happiness are within reach. The harsh reality is that if you don’t develop your own vision, you’ll allow other people and circumstances to direct the course of your life.

    Advertising

    How to Create Your Life Vision

    Don’t expect a clear and well-defined vision overnight—envisioning your life and determining the course you will follow requires time, and reflection. You need to cultivate vision and perspective, and you also need to apply logic and planning for the practical application of your vision. Your best vision blossoms from your dreams, hopes, and aspirations. It will resonate with your values and ideals, and will generate energy and enthusiasm to help strengthen your commitment to explore the possibilities of your life.

    What Do You Want?

    The question sounds deceptively simple, but it’s often the most difficult to answer. Allowing yourself to explore your deepest desires can be very frightening. You may also not think you have the time to consider something as fanciful as what you want out of life, but it’s important to remind yourself that a life of fulfillment does not usually happen by chance, but by design.

    It’s helpful to ask some thought-provoking questions to help you discover the possibilities of what you want out of life. Consider every aspect of your life, personal and professional, tangible and intangible. Contemplate all the important areas, family and friends, career and success, health and quality of life, spiritual connection and personal growth, and don’t forget about fun and enjoyment.

    Advertising

    Some tips to guide you:

    • Remember to ask why you want certain things
    • Think about what you want, not on what you don’t want.
    • Give yourself permission to dream.
    • Be creative. Consider ideas that you never thought possible.
    • Focus on your wishes, not what others expect of you.

    Some questions to start your exploration:

    • What really matters to you in life? Not what should matter, what does matter.
    • What would you like to have more of in your life?
    • Set aside money for a moment; what do you want in your career?
    • What are your secret passions and dreams?
    • What would bring more joy and happiness into your life?
    • What do you want your relationships to be like?
    • What qualities would you like to develop?
    • What are your values? What issues do you care about?
    • What are your talents? What’s special about you?
    • What would you most like to accomplish?
    • What would legacy would you like to leave behind?

    It may be helpful to write your thoughts down in a journal or creative vision board if you’re the creative type. Add your own questions, and ask others what they want out of life. Relax and make this exercise fun. You may want to set your answers aside for a while and come back to them later to see if any have changed or if you have anything to add.

    Advertising

    What Would Your Best Life Look Like?

    Describe your ideal life in detail. Allow yourself to dream and imagine, and create a vivid picture. If you can’t visualize a picture, focus on how your best life would feel. If you find it difficult to envision your life 20 or 30 years from now, start with five years—even a few years into the future will give you a place to start. What you see may surprise you. Set aside preconceived notions. This is your chance to dream and fantasize.

    A few prompts to get you started:

    • What will you have accomplished already?
    • How will you feel about yourself?
    • What kind of people are in your life? How do you feel about them?
    • What does your ideal day look like?
    • Where are you? Where do you live? Think specifics, what city, state, or country, type of community, house or an apartment, style and atmosphere.
    • What would you be doing?
    • Are you with another person, a group of people, or are you by yourself?
    • How are you dressed?
    • What’s your state of mind? Happy or sad? Contented or frustrated?
    • What does your physical body look like? How do you feel about that?
    • Does your best life make you smile and make your heart sing? If it doesn’t, dig deeper, dream bigger.

    It’s important to focus on the result, or at least a way-point in your life. Don’t think about the process for getting there yet—that’s the next stepGive yourself permission to revisit this vision every day, even if only for a few minutes. Keep your vision alive and in the front of your mind.

    Advertising

    Plan Backwards

    It may sound counter-intuitive to plan backwards rather than forwards, but when you’re planning your life from the end result, it’s often more useful to consider the last step and work your way back to the first. This is actually a valuable and practical strategy for making your vision a reality.

    • What’s the last thing that would’ve had to happen to achieve your best life?
    • What’s the most important choice you would’ve had to make?
    • What would you have needed to learn along the way?
    • What important actions would you have had to take?
    • What beliefs would you have needed to change?
    • What habits or behaviors would you have had to cultivate?
    • What type of support would you have had to enlist?
    • How long will it have taken you to realize your best life?
    • What steps or milestones would you have needed to reach along the way?

    Now it’s time to think about your first step, and the next step after that. Ponder the gap between where you are now and where you want to be in the future. It may seem impossible, but it’s quite achievable if you take it step-by-step.

    It’s important to revisit this vision from time to time. Don’t be surprised if your answers to the questions, your technicolor vision, and the resulting plans change. That can actually be a very good thing; as you change in unforeseeable ways, the best life you envision will change as well. For now, it’s important to use the process, create your vision, and take the first step towards making that vision a reality.

    Featured photo credit: Matt Noble via unsplash.com

    Read Next