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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.

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“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.

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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.

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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.

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“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.

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Last Updated on January 17, 2019

8 Simple Mindfulness Exercises to Bring Peace and Happiness to Your Life

8 Simple Mindfulness Exercises to Bring Peace and Happiness to Your Life

In life, we all need to be conscientious of what we are doing. You don’t need to live a life of stress if you don’t want to. You can achieve peace and happiness in life by carefully building mindfulness exercises into your life’s routine.

Exercising mindfulness isn’t rocket science and as importantly, you can do it. It will, however, take a few tries to get into the groove of things but once you get it, it is like riding a bike, you will never lose it.

Trust me. It’s in your best interest to learn and put these mindfulness exercises into practice. In this article, I will share with you 8 mindfulness exercises that will help you to boost your energy, vitality and live a more peaceful and happier life.

Why Is It Hard to Live A Peaceful And Happy Life?

Our Habitat Has Become Too Technological

The world has accepted the idea that technology is often the cure for all evil. We have accepted, as a society, that everything technological will make us live a better life without fully investigating the many side effects that modernity brings.

There are a number of technological side effects that have a tremendous impact on your life that the media rarely tells you about.[1] Some of them include self-harm, economic inequality, having less sex, and even suicide. The global community is becoming less happy because of technology.

How can anybody live a peaceful and happy life when they are depressed? Technology advancements, ladies and gents, is a major reason for why we are living a poor life because it has infiltrated our lives too much.

According to my research, Americans spend an average of 8 hours a day looking at the computer screen — The average screen time spent on smartphones alone is about 20 hours per week. That’s a lot! No wonder why living a happy and peaceful life is so difficult these days.

Too Many People Don’t Want to Unplug

Americans check their phones an average of 80 times during vacation.[2] Some admit to checking their smartphones 300 times every single day. In countries like Brazil, India and China, the situation is no different.

The reality is that people are constantly plugged into technological devices and this behavior is literally making people all over the globe fight an inner war with themselves, which consequently makes them very sad. As we know, war is the enemy of peace which won’t make anybody happy.

Listen carefully:

We have a global anxiety epidemic because people don’t want to unplug from their smartphones and most people aren’t doing anything to fix it. It is a sad state of affairs but very real. This obsession with technology is turning us into perishable robots who live terrible lives.

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The era of anxiety is here to stay. There is little doubt about it. We can, however, fight back with the best remedy of all — We call it mindfulness!

Thank God there is an antidote to this whole technological madness. Without further ado, let’s go straight to the mindful exercises.

8 Mindfulness Exercises to Start Practicing

There are tons of mindfulness exercises available for you to engage with out there.[3] In the paragraphs below, I will include the best ones I’ve personally tried or have seen my close friends and family members try.

Are you ready for it? Let’s go!

1. Pray Daily

You should pray on a daily basis. Why is that you may ask — Well, because science has told us to do so.

When people pray, they feel peaceful, almost eliminating anxiety. Worries become secondary, and often gives people energy and hope to cope with the difficulties of life.

Prayer can make you more confident and focused. Prayer also helps you with self-control, helps to control pain, and can protect you against illnesses and disorders like cancer and high blood pressure. At least, this is what researchers from Harvard Medical School have said.[4]

Pray. You won’t regret it.[5]

2. Pay Attention to Your Inner Thoughts

A lot of people allow themselves to be influenced by their negative thoughts. Be different and resist believing in them. It is a bad habit that can lead to unhappiness.

By the way, if you do feel this way, chances are high that somebody other than you put these thoughts into your head.

Here is my secret to combat this cancer — look at things objectively. I bet that if you look at things as they are, you will realize that most if not all of your negative thoughts are only inside of your head.

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If you pay close attention, you will quickly realize that these voices aren’t worth your time. Believe me — Ignoring them and looking at things with objectivity is often the best course of action.

This article can guide you to beat negative thoughts:

How to Stop Automatic Negative Thoughts When You’re Overwhelmed

3. Smile Often

Smiling will slow down your heart. It will also relax your body because when you smile, your body releases endorphins which in itself has a number of positive benefits for you as a person.

Smile often! You may want to smile early in the morning, during the day, and late in the evening. It is amazing what happens to you when you decide to smile instead of being grumpy.

Surrender your problems to a nice smile. You will notice two things. First, most people just don’t which makes them live a miserable life. Second, if you decide to smile often, you will eventually smile unconsciously which is the ideal.

The moment that you smile unconsciously, you then know that you are truly happy.

4. Organize Your Working Desk

A messy desk will make you less productive and can agitate and overstimulate you. You don’t want that.

When you clear your desk, you engage in deep inner-thinking and your systematic decision making ends up becoming therapeutic.

Most people realize that they are most creative when their creative space is clean and organized. The former often makes people more aware of what they are doing which lends to less stress and more productivity.

Organizing your desk will also make you more energetic and focused because order often decreases chaos which is a condition that often slows down daily progress.

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5. Celebrate Your Friend’s Victories

I love this mindful exercise. One of the best ways to live a happy and peaceful life is to celebrate the victories of others. When you do that, you automatically make your friends in a better mood which makes you in a better mood, as well.

Happiness is contagious! We might as well celebrate others as much as we can. If you find out that your peer has won an award, celebrate with him! If your friend is the recipient of a local charity award, celebrate with her!

What is also awesome is that when you celebrate with others, they often celebrate with you in return. This, ladies and gentleman, will make you feel fantastic. You can’t go wrong with this one, period.

6. Listen to Your Spouse/Partner

God put someone in your life for a reason. You might as well listen to him or her.

I listen to my wife everyday. In fact, I often ask the following question to her, “Amanda, what are your thoughts about…” or “What am I missing about…” It is shocking what I hear back from her. Without her having much context and perspective, by the art of observation in my own nonverbal behavior and the behavior of others, she accurately gives me incredible insights which helps me out with living my life to the fullest.

I’m a firm believer that spouses are supposed to engage in interpersonal communication every day. I most definitely do and will continue doing it. You should do the same.

7. Give Yourself a Break from Technology

You can’t be in total equilibrium if your computerized devices control your life. You must get away from technology on a daily basis.[6]

How do you do that? This is my formula:

First, take this smartphone control test. It is only ten questions but this test will place you somewhere in the human robot cycle continuum.

If your score is between 25-30, take a break from the computer (or smartphone, pad, laptop/desktop) every twenty minutes and stop being on a computerized device after 8:00pm.

If you score between 30-35, still take a break every 20 minutes but stop being on these devices at 5:00pm.

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If you score more than 35, you need to take action immediately.

Limit computer use as much as possible throughout the day. Give yourself as many breaks from the computer as possible. Are you ready for the challenge?

8. Go Exercise

Go exercise at least three times a week. I don’t care if you need to workout early in the morning, late in the evening, on the weekends or during work days. Working out is absolutely imperative for you to live happy and peaceful life.

The stresses of the modern world are too much for you to neglect this important mindfulness exercise. When you go to the gym, you burn calories, focus on activities one step at a time, your mind relaxes, anxiety decreases, you sweat and often think about topics unrelated to your work place among many other benefits.

You must exercise at least three hours each week for optimum results. Why? Just take a look at all the benefits of regular exercising:

12 Benefits of Regular Exercise You Should Know

The Bottom Line

It’s in your best interest to learn and put these mindfulness exercises into practice. Now that our habitat has become too technological and many people just don’t want to unplug, engaging in daily prayer, celebrate your friends’ victories, and listening to your spouse are among the best ways to be mindful about what you are doing and how you are living.

It is possible to live a happy and peaceful life. It only depends on you.

Go exercise! Take a break from technology and invest in you! Life is too short for distractions.

More Resources About Mindfulness

Featured photo credit: Lesly Juarez via unsplash.com

Reference

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