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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 September 10, 2019

7 Morning Rituals to Empower Your Day And Change Your Life

7 Morning Rituals to Empower Your Day And Change Your Life

Most of your reality is not a given. It is shaped by your expectations, beliefs and thoughts you have formed about it. A big chunk of these beliefs and expectations are encoded into habits you integrate in your daily life.

Yes, some of these habits are formed unconsciously and can be counter-productive or limiting but conversely, you can consciously form positive habits that will transform and empower your life significantly.

This is a powerful point of departure that more and more people are becoming aware of. The most common trait of highly successful people is the recognition of the power they have in co-creating their reality through changing the way they think, believe or expect their reality to be.

One of the most effective ways of changing our belief patterns is through practising and maintaining daily rituals. Ancient traditions had clearly understood the power of rituals in reinforcing habits and changing the way we see and create our reality a long, long time ago.

Once again, if you look into the life history of any highly successful individual, you will find some form of ritual in their daily routine. Some of these rituals may seem banal or eccentric but don’t be deceived by appearances. Rituals are one of the most effective self-empowering tools freely available at the practitioner’s disposal – that is, you!

Below are some the easiest yet life-changing morning rituals you can do every day. Of course, you can have your own afternoon or bed-time rituals but morning rituals are extremely effective in empowering your day since they help you charge yourself before it all starts.

1. Gratitude

Feeling gratitude and appreciation for those little signs and moments of joy happening in your life is probably one of the most overlooked or underestimated rituals. It is a perfect morning ritual to start your day on a very positive key.

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The real power of gratitude is that it makes you pick out and focus on what is working in your life – what is in tune with your being as a whole. It is selectively positive. It reinforces happiness and positivity by shedding light on those awesome things, small or big, that grace your everyday living.

Quite often, we just pick out the pain points, the problems, the bottle necks, whatever it is that is not working in our life and causing friction, anxiety and unhappiness. This is like constantly rewriting the script of your life with a negative or tragic overtone. Your subconscious mind follows faithfully that script you write whether it is a negative or positive one.

So feeling gratitude is undoubtedly an immensely empowering ritual. Start your day by being thankful for those positive things that happened the previous day or throughout the week. It could be something really petty and small. It doesn’t matter. You might be grateful for an unexpected visit from an old friend, a beautiful encounter with a kind stranger, a new opportunity or whatever it is that shines your way. Do it every morning and see what happens during the day.

Gratitude-Quotes

    2. Writing Down Your Most Important Tasks

    This is a very practical ritual. Start your day by identifying and writing down from one to three of the most important tasks you need to complete during that day. These tasks are ones which support important long term goals that are aligned to your purpose, passion or general direction in life.

    For example, if writing a book or building an online community are important long term goals which are aligned to your personal growth, then an important task for the day might be finishing off a particular page or two of the book or coming up with fresh content ideas for the online community.

    What is important with this ritual is that you identify these tasks and complete them as early in the day as possible. Of course, you will have other tasks apart from the ones you will write down but, these are tasks which can be tackled later or batched up and carried out in one go.

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    Writing down your most important tasks in the morning helps you focus your day and life according to what is essential. It helps you prioritize and manage your time better. As a result, you simplify your life by applying your focus and energy on what really counts for your overall life progress.

    3. Affirm Your Goals in Writing or Drawing

    This is similar to the previous idea but different in its application and purpose. Writing down your most important tasks of the day is a way to have a concrete structure of action to follow. Affirming your goals, on the other hand, is a very powerful way of crystallizing your vision and goals in life into your everyday mental space.

    Writing down or doodling your goals on a piece of paper helps you externalize those goals by giving them form. In return, they are reflected back in your subconscious mind and thus, reinforcing them and integrating them more wholly.

    An example of this would be writing down “I am achieving greater success in my career” or “I am becoming healthier and stronger through my exercise.” Notice the present tense being used as a way to tell yourself you are in the process already. Remember the life script we subconsciously follow? You are basically modifying the script to be applied now in the present.

    Drawing or doodling can be equally, or even more, effective  (if you are more of a visual person) as it summarizes a graphical representation of your goals. For example, if your goal is to build a new house or live in another country, you can draw the house or draw things that symbolise the country you want to live in.

    write down goals

      4. Practice Qi Gong Exercises

      According to Chinese philosophy, Qi (pronounced ‘Chee’) means the life force or energy inherent in all things;[1] and Qi Gong is the practice to cultivate and circulate that energy in your body. This may sound esoteric or complicated but actually, Qi Gong is really a set of simple exercises aimed at increasing your health and vitality.

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      There are numerous forms and practices available for free through the online media. As a morning ritual, I recommend following these simple exercises by Qi Gong master Lee Holden:

      5. Drink Hot Water with Lemon

      Simply add a slice of lemon in a glass of hot water and drink one every morning. This is a very simple ritual I follow faithfully every morning.

      Apart from being a good source of vitamin C and a great way of flushing out toxins in the morning, it balances and maintains the PH levels in the body, reduces pain and inflammation in joints and knees and helps nourishing brain and nerve cells. Here are some more benefits of drinking hot water with lemon.

      6. Rise Earlier

      The practical advantages of waking up early are obvious.

      For example, you gain more time for doing exercise such as walking, cycling or Qi Gong as suggested above. You gain more time to be with yourself to reflect, meditate or, more importantly, carry out the other morning rituals.

      So rising early can be seen as a foundation for all the other morning rituals. Many, like myself, find that they are more productive in the early hours of the day.

      Also, various studies have shown that there are many other benefits from waking up an hour or two earlier in the morning. Sleeping early and waking up early helps the body attune with the earth’s circadian rhythms thus, promoting more restorative sleep. Other curious results from such studies show, for instance, that early risers tend to be more optimistic and can anticipate and solve problems more efficiently than the norm.[2]

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      7. Listen to Uplifting Music

      Uplifting music can have a direct impact on our mood, especially in the morning. It charges us emotionally and tunes us into a more positive outlook of the day ahead.

      Most people wake up to music or listen to music as they commute to work. Very often, however, they tune in to a radio or randomly pick a playlist from their device. Being more selective and conscious of the music you listen to in the morning can have a great impact on your day and life in general.

      It’s funny how we try to choose music according to our mood. For example if you are feeling down or disappointed by something, you are more prone to listen to music that reflects that mood – for instance blues, sad songs or downtempo music. This has the effect of reinforcing that mood. What you need to do is the exact opposite and retune your mood by listening to music that beats to a different tune than that mood.

      Try to listen to more uplifting music in the morning even if, or especially if, your mood does not dictate so.

      More About Energetic Habits & Rituals

      Featured photo credit: Carli Jeen via unsplash.com

      Reference

      [1] Live Science: What Is Qi Gong
      [2] Harvard Business Review: Defend Your Research: The Early Bird Really Does Get the Worm

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