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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

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Robert Locke

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

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Published on November 14, 2018

Why You Suffer from Constant Fatigue and How to Deal with It

Why You Suffer from Constant Fatigue and How to Deal with It

With our busy, always on lives, it seems that more and more of us are facing constant tiredness and fatigue on a regular basis.

For many people, they just take this in their stride as part of modern life, but for others the impact can be crippling and can have a serious effect on their sense of wellbeing, health and productivity.

In this article, I’ll share some of the most common causes of constant tiredness and fatigue and give you some guidance and action steps you can take to overcome some of the symptoms of fatigue.

Why Am I Feeling Fatigued?

Fatigue is extreme tiredness resulting from mental or physical exertion or illness.  It is a reduction in the efficiency of a muscle or organ after prolonged activity.[1]

It can affect anyone, and most adults will experience fatigue at some point in their life. 

For many people, fatigue is caused by a combination of lifestyle, social, psychological and general wellbeing issues rather than an underlying medical condition.

Although fatigue is sometimes described as tiredness, it is different to just feeling tired or sleepy. Everyone feels tired at some point, but this is usually resolved with a nap or a few nights of good sleep. Someone who is sleepy may also feel temporarily refreshed after exercising. If you are getting enough sleep, good nutrition and exercising regularly but still find it hard to perform, concentrate or be motivated at your normal levels, you may be experiencing a level of fatigue that needs further investigation. 

Symptoms of Fatigue

Fatigue can cause a vast range of physical, mental and emotional symptoms including:

  • chronic tiredness, exhaustion or sleepiness
  • mental blocks
  • lack of motivation
  • headache
  • dizziness
  • muscle weakness
  • slowed reflexes and responses
  • impaired decision-making and judgement
  • moodiness, such as irritability
  • impaired hand-to-eye coordination
  • reduced immune system function
  • blurry vision
  • short-term memory problems
  • poor concentration
  • reduced ability to pay attention to the situation at hand

Causes of Fatigue

The wide range of causes that can trigger fatigue include:

  • Medical causes: Constant exhaustion, tiredness and fatigue may be a sign of an underlying illness, such as a thyroid disorder, heart disease, anemia or diabetes.
  • Lifestyle-related causes: Being overweight and a lack of regular exercise can lead to feelings of fatigue.  Lack of sleep and overcommitting can also create feelings of excessive tiredness and fatigue.
  • Workplace-related causes: Workplace and financial stress in a variety of forms can lead to feelings of fatigue.
  • Emotional concerns and stress: Fatigue is a common symptom of mental health problems, such as depression and grief, and may be accompanied by other signs and symptoms, including irritability and lack of motivation.

Fatigue can also be caused by a number of factors working in combination.

Medical Causes of Fatigue

If you have made lifestyle changes to increase your energy and still feel exhausted and fatigued, it may be time to seek guidance from your doctor.

Here are a few examples of illnesses that can cause ongoing fatigue. Seek medical advice if you suspect you have a health problem:

Anemia

Anemia is a condition in which you don’t have enough healthy red blood cells to carry adequate oxygen to the body’s tissues. It is a common cause of fatigue in women.

Having anemia may make you feel tired and weak.

There are many forms of anemia, each with its own cause. Anemia can be temporary or long term, and it can range from mild to severe.[2]

Chronic Fatigue Syndrome (CFS)

Chronic Fatigue Syndrome (CFS) is a condition that can cause persistent, unexplained fatigue that interferes with daily activities for more than six months.

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This is a chronic condition with no one-size-fits-all treatment, but lifestyle changes can often help ease some symptoms of fatigue.[3]

Diabetes

Diabetes can cause fatigue with either high or low blood sugars. When your sugars are high, they remain in the bloodstream instead of being used for energy, which makes you feel fatigued. Low blood sugar (glucose) means you may not have enough fuel for energy, also causing fatigue.[4]

Sleep Apnea

Sleep apnea is a serious sleep disorder where sufferers briefly stop breathing for short periods during sleep. Most people are not aware this is happening, but it can cause loud snoring, and daytime fatigue.

Being overweight, smoking, and drinking alcohol can all worsen the symptoms of sleep apnea.[5]

Thyroid disease

An underactive thyroid gland means you have too little thyroid hormone (thyroxine) in your body. This makes you feel tired and you could also put on weight and have aching muscles and dry skin.[6]

Common lifestyle factors that can cause fatigue include:

  • Lack of sleep
  • Too much sleep 
  • Alcohol and drugs 
  • Sleep disturbances 
  • Lack of regular exercise and sedentary behaviour 
  • Poor diet 

Common workplace issues that can cause fatigue include:

  • Shift work: Our body is designed to sleep during the night. A shift worker may confuse their circadian clock by working when their body is programmed to be asleep.
  • Poor workplace practices: This may include long work hours, hard physical labour, irregular working hours (such as rotating shifts), a stressful work environment, boredom or working alone. 
  • Workplace stress – This can be caused by a wide range of factors including job dissatisfaction, heavy workload, conflicts with bosses or colleagues, bullying, or threats to job security.
  • Burnout: This could be striving too hard on one area of your life while neglecting others, which leads to a life that feels out of balance.

Psychological Causes of Fatigue

Psychological factors are present in many cases of extreme tiredness and fatigue.  These may include:

  • Depression: Depression is characterised by severe and prolonged feelings of sadness, dejection and hopelessness. People who are depressed commonly experience chronic fatigue.
  • Anxiety and stress: Someone who is constantly anxious or stressed keeps their body in overdrive. The constant flooding of adrenaline exhausts the body, and fatigue sets in.
  • Grief: Losing a loved one causes a wide range of emotions including shock, guilt, depression, despair and loneliness.

How to Tackle Constant Fatigue

Here are 12 ways you can start tackling the causes of fatigue and start feeling more energetic.

1. Tell The Truth

Some people can numb themselves to the fact that they are overtired or fatigued all the time. In the long run, this won’t help you.

To give you the best chance to overcome or eliminate fatigue, you must diagnose and tell the truth about the things that are draining your energy, making you tired or causing constant fatigue.

Once you’re honest with yourself about the activities you’re doing in your life that you find irritating, energy-draining, and make you tired on a regular basis you can make a commitment to stop doing them.

The help that you need to overcome fatigue is available to you, but not until you tell the truth about it. The first person you have to sell on getting rid of the causes of fatigue is yourself.

One starting point is to diagnose the symptoms. When you start feeling stressed, overtired or just not operating at your normal energy levels make a note of:

  • How you feel
  • What time of day it is
  • What may have contributed to your fatigue
  • How your mind and body reacts

This analysis may help you identify, understand and then eliminate very specific causes.

2. Reduce Your Commitments

When we have too many things on our plate personally and professionally, we can feel overstretched, causing physical and mental fatigue.

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If you have committed to things you really don’t want to do, this causes irritability and low emotional engagement. Stack these up throughout your day and week, then your stress levels will rise.

When these commitments have deadlines associated with them, you may be trying to cram in far too much in a short period of time.  This creates more stress and can affect your decision making ability.

Start being realistic about how much you can get done. Either reduce the commitments you have or give yourself more time to complete them in.

3. Get Clear On Your Priorities

If working on your list of to-do’s or goals becomes too overwhelming, start reducing and prioritizing the things that matter most.

Start with prioritizing just 3 things every day. When you complete those 3 things, you’ll get a rush of energy and your confidence will grow.

If you’re trying to juggle too many things and are multi-tasking, your energy levels will drop and you’ll struggle to maintain focus.

Unfinished projects can make you self-critical and feel guilty which drops energy levels further, creating inaction.

Make a list of your 3 MIT (Most Important Tasks) for the next day before you go to bed. This will stop you overcommitting and get you excited about what the next day can bring.

4. Express More Gratitude

Gratitude and confidence are heavily linked. Just being thankful for what you have and what you’ve achieved increases confidence and makes you feel more optimistic.

It can help you improve your sense of wellbeing, which can bring on feelings of joy and enthusiasm.

Try starting a gratitude journal or just note down 3 things you’re grateful for every day.

5. Focus On Yourself

Exhaustion and fatigue can arrive by focusing solely on other people’s needs all the time, rather than worrying about and focusing on what you need (and want).

There are work commitments, family commitments, social commitments. You may start with the best intentions, to put in your best performance at work, to be an amazing parent and friend, to simply help others.

But sometimes, we extend ourselves too much and go beyond our personal limits to help others. That’s when constant exhaustion can creep up on us.  Which can make us more fatigued.

We all want to help and do our best for others, but there needs to be some balance. We also need to take some time out just for ourselves to recharge and rejuvenate.

6. Set Aside Rest and Recovery Time

Whether it’s a couple of hours, a day off, a mini-break or a proper holiday, time off is essential to help us recover, recharge and refocus.

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Recovery time helps fend off mental fatigue and allows us to simply kick back and relax.

The key here, though, is to remove ourselves from the daily challenges that bring on tiredness and fatigue. Here’s how.

Can you free yourself up completely from work and personal obligations to just rest and recover?

7. Take a Power Nap

When you’re feeling tired or fatigued and you have the ability to take a quick 20-minute nap, it could make a big difference to your performance for the rest of the day.

Napping can improve learning, memory and boost your energy levels quickly.

This article on the benefit of napping is a useful place to start if you want to learn more: How a 20-Minute Nap at Work Makes You Awake and Productive the Whole Day

8. Take More Exercise

The simple act of introducing some form of physical activity into your day can make a huge difference. It can boost energy levels, make you feel much better about yourself and can help you avoid fatigue.

Find something that fits into your life, be that walking, going to the gym, running or swimming. 

The key is to ensure the exercise is regular and that you are emotionally engaged and committed to stick with it.

You could also walk more which will help clear your head and shift your focus away from stressful thoughts.

9. Get More Quality Sleep

To avoid tiredness, exhaustion and fatigue, getting enough quality sleep matters. 

Your body needs sleep to recharge.  Getting the right amount of sleep every night can improve your health, reduce stress levels and help us improve our memory and learning skills.

My previous article on The Benefits of Sleep You Need to Know will give you some action steps to start improving your sleep. 

10. Improve Your Diet

Heavy or fatty meals can make you feel sluggish and tired, whilst some foods or eating strategies do just the opposite.

Our always on lives have us reaching for sweets or other sugary snacks to give us a burst of energy to keep going. Unfortunately, that boost fades quickly which can leave you feeling depleted and wanting more.

On the other hand, whole grains and healthy unsaturated fats supply the reserves you can draw on throughout the day.

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To keep energy up and steady, it’s a good idea to limit refined sugar and starches.

Eating small meals and healthy snacks every few hours throughout the day provides a steady supply of nutrients to body and brain. It’s also important not to skip breakfast.

Eating a balanced diet helps keep your blood sugar in a normal range and prevents that sluggish feeling when your blood sugar drops.

11. Manage Your Stress Levels

Stress is one of the leading causes of exhaustion and fatigue, and can seriously affect your health.

When you have increased levels of stress at work and at home, it’s easy to feel exhausted all the time. 

Identifying the causes of stress and then tackling the problems should be a priority. 

My article on How to Help Anxiety When Life is Stressing You Out shares 16 strategies you can use to overcome stress.

12. Get Hydrated

Sometimes we can be so busy that we forget to keep ourselves fully hydrated.

Water makes up about 60 percent of your body weight and is essential in maintaining our body’s basic functions.

If we don’t have enough water, it can adversely affect our mental and physical performance, which leads to tiredness and fatigue.

The recommended daily amount is around two litres a day, so to stay well hydrated keep a water bottle with you as much as possible.

The Bottom Line

These 12 tips can help you reduce your tiredness and feeling of fatigue.  Some will work better than others as we are all different, whilst others can be incorporated together in your daily life.

If you’ve tried to make positive changes to reduce fatigue and you still feel tired and exhausted, it may be time to consider making an appointment with your doctor to discuss your condition.

Featured photo credit: Annie Spratt via unsplash.com

Reference

[1]Oxford English Dictionary: Definition of fatigue
[2]NHS Choices: 10 Reasons for feeling tired
[3]Verywellhealth: What is chronic fatigue syndrome
[4]Everyday Health: Why does type 2 diabetes make you feel tired
[5]Mayo Clinic: Sleep apnea
[6]Harvard Health: The lowdown on thyroid slowdown

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