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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 May 22, 2019

10 Simple Morning Exercises That Will Make You Feel Great All Day

10 Simple Morning Exercises That Will Make You Feel Great All Day

There are lots of studies that show if you do some exercise in the morning, you will be in a better mood all day long. You will have more energy and you will certainly be a better colleague, friend or partner.

One psychologist at Duke University has researched the effects of exercise on depressed patients and he has come to the conclusion that exercise has a definite role in treating this condition and has an important role in preventing people from relapsing.[1] According to the New York Times, scientists have now established that exercise also boosts your brain power.[2]

In addition, there are studies from the Appalachian State University which show that blood pressure can be reduced by doing regular morning exercise.[3]

Here are 10 simple morning exercises that will help you feel great the whole day long. You can include some of them in your morning exercise routine or do them all at home without having to enrol in a gym. Consult your doctor before starting any form of exercise routine if you are new to this.

1. Cat Camel Stretch

Stretching exercises are useful for muscle toning and also preventing arthritis. They can either be dynamic or static.

Dynamic ones such as the cat camel stretch, are particularly useful for doing other exercises in the morning. They are also beneficial at other times of the day, especially after long periods of sedentary work. This one is great for spinal flexibility and is a good warm up exercise.

Kneel down on all fours. Start by rounding your back just like a camel so that your head will try to meet your pelvis. This is the camel position. Then lower and lift your head so that your lower back is arched. This is the cat position. Do these movements slowly and smoothly. About 4 or 5 times.

Here’s a video to guide you through:

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2. Go for a Walk or a Run

This is better done outside so that you can connect with nature but running inside on a treadmill is almost as good. You can time yourself and increase length and time according to your fitness program.

Always have new goals to reach. Start with brisk walking and work up to running. At my age, I am still walking!

The health benefits are considerable. You can build stronger bones and you can help to maintain your weight.

Also, you are helping your heart to stay healthy and keeping your blood pressure low.

Learn more about the benefits of running here: 8 Benefits of Running 5 Minutes Every Day You Didn’t Know

3. Jumping Jacks

Michelle Obama is a great fan of this exercise and has become “Jumper in Chief.”[4] They are great for cardiovascular health and also for toning muscles especially the calves and the deltoids.

Stand with feet together. Jump while spreading your arms and legs. Return to first position and keep going! You can start with doing these for 1 minute and then gradually build up to the number you are comfortable with. Here’s how:

4. Abductor Side Lifts

Watch the video below to see how to do this exercise. These muscles are important because you use them everyday to run, get into the car or onto and off a bicycle. They are very important also for your core stability and prevent the pelvis from tilting.[5]

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Do about 10 to 15 raises for each side like this:

5. Balancing Table Pose

This is a classic yoga pose. It benefits the spine, balance, memory and concentration.

Start with the table pose (hands and knees). Breathe in before starting each movement. As you exhale, raise your left leg parallel to the floor as you raise the right arm, also parallel to the floor. Breathe in as you lower arm and leg. Repeat for the other side. 10 repetitions on each side is a good starting point.

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    6. Leg Squats

    Not just legs are involved but also hips and knees.

    Stand with your feet a bit further out from your hips. Arms are out in front of you. Then lower yourself as if you wanted to sit down until you reach a 90 degree angle. You can go down further if you want to. Then return to the starting position. Repeat 15 times for 2 sets for beginners.

    The benefits are that these exercises help with knee stability and can benefit the leg muscles such as quadriceps, hamstrings and calves.[6]

    7. Push Ups

    You start lying down (face down) but with your body held up at arm’s length. Your hands should be in line with your shoulders. Breathe in as you lower your body. That is fairly easy. Now, as you exhale, you have to get back up to the starting position.

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    An easier version to start with is to bend your legs at the knees so you do not have to lift your whole body.

    Beginners may take up to a month to be able to do 100 push ups so you will have to start with a very small number and gradually increase it.

    This exercise is great for strengthening the chest, shoulders and the triceps. It is a great strengthening exercise for many muscle groups. In fact, most muscles from the toes to the shoulders are being used.

    8. Bicycle Crunches

    There are numerous crunch exercises targeting the abs. The bicycle crunch is a variation where you work more muscle groups. Aim for 15 to 20 reps to start off with.

    Watch the video to see how this is done correctly:

    9. Lunges

    Stand with feet shoulder width apart. Place your hand on your hips. Take one giant step forward with the right leg. Make sure the knee does not go too far forward, that is, past your toes. The left knee will go down to almost floor level. Alternate the legs as you go on.

    Try to do a set of between 8 and 12 reps for each leg. It is important to allow for a day of rest, so this exercise should be done on alternate days, especially if you are using weights.

    This exercise is great for strengthening and toning the quadriceps, glutes and hamstrings.

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    10. Bicep Curls

    You can do this sitting down so if you spend a lot of time on the phone, this is a great exercise to do.

    Choose suitable dumbbells or another household object that you can easily hold. Sit down with the dumbbell in your hand. You need to sit forward a bit so that your triceps can lean on your thigh to give you support.

    Then bring the weighted arm up to shoulder length and then down again. Exhale as you lift the weight and inhale as you lower it.

    Here’re some important notes before you start doing this exercise:

    Try to do one or two sets of about ten repetitions for each arm and then switch arms.

    These exercises are really useful for toning the arm muscles.[7] In addition, they can strengthen and tone the brachioradialis muscle located in the forearm. These are the muscles we use to pick up things when we flex the arm at the elbow so we use these muscles countless times a day.

    You may have to build in a rest day for the heavier exercises, numbers 6–10. On the rest days, you can do gentler stretching exercises and also some walking or running.

    Morning exercise is not only a great mood booster, but will help you keep your weight down and also sleep better![8] Start including one or some of these exercises in your morning routine!

    More Articles About Exercises for Beginners

    Featured photo credit: Unsplash via unsplash.com

    Reference

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