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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

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Last Updated on September 20, 2018

How to Stay Calm and Cool When You Are Extremely Stressful

How to Stay Calm and Cool When You Are Extremely Stressful

Being in a hurry all the time drains your energy. Your work and routine life make you feel overwhelmed. Getting caught up in things beyond your control stresses you out…

If you’d like to stay calm and cool in stressful situations, put the following 8 steps into practice:

1. Breathe

The next time you’re faced with a stressful situation that makes you want to hurry, stop what you’re doing for one minute and perform the following steps:

  • Take five deep breaths in and out (your belly should come forward with each inhale).
  • Imagine all that stress leaving your body with each exhale.
  • Smile. Fake it if you have to. It’s pretty hard to stay grumpy with a goofy grin on your face.

Feel free to repeat the above steps every few hours at work or home if you need to.

2. Loosen up

After your breathing session, perform a quick body scan to identify any areas that are tight or tense. Clenched jaw? Rounded shoulders? Anything else that isn’t at ease?

Gently touch or massage any of your body parts that are under tension to encourage total relaxation. It might help to imagine you’re in a place that calms you: a beach, hot tub, or nature trail, for example.

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3. Chew slowly

Slow down at the dinner table if you want to learn to be patient and lose weight. Shoveling your food down as fast as you can is a surefire way to eat more than you need to (and find yourself with a bellyache).

Be a mindful eater who pays attention to the taste, texture, and aroma of every dish. Chew slowly while you try to guess all of the ingredients that were used to prepare your dish.

Chewing slowly will also reduce those dreadful late-night cravings that sneak up on you after work.

4. Let go

Cliche as it sounds, it’s very effective.

The thing that seems like the end of the world right now?

It’s not. Promise.

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Stressing and worrying about the situation you’re in won’t do any good because you’re already in it, so just let it go.

Letting go isn’t easy, so here’s a guide to help you:

21 Things To Do When You Find It Hard To Let Go

5. Enjoy the journey

Focusing on the end result can quickly become exhausting. Chasing a bold, audacious goal that’s going to require a lot of time and patience? Split it into several mini-goals so you’ll have several causes for celebration.

Stop focusing on the negative thoughts. Giving yourself consistent positive feedback will help you grow patience, stay encouraged, and find more joy in the process of achieving your goals.

6. Look at the big picture

The next time you find your stress level skyrocketing, take a deep breath, and ask yourself:

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Will this matter to me…

  • Next week?
  • Next month?
  • Next year?
  • In 10 years?

Hint: No, it won’t.

I bet most of the stuff that stresses you wouldn’t matter the next week, maybe not even the next day.

Stop agonizing over things you can’t control because you’re only hurting yourself.

7. Stop demanding perfection of yourself

You’re not perfect and that’s okay. Show me a person who claims to be perfect and I’ll show you a dirty liar.

Demanding perfection of yourself (or anybody else) will only stress you out because it just isn’t possible.

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8. Practice patience every day

Below are a few easy ways you can practice patience every day, increasing your ability to remain calm and cool in times of stress:

  • The next time you go to the grocery store, get in the longest line.
  • Instead of going through the drive-thru at your bank, go inside.
  • Take a long walk through a secluded park or trail.

Final thoughts

Staying calm in stressful situations is possible, all you need is some daily practice.

Taking deep breaths and eat mindfully are some simple ways to train your brain to be more patient. But changing the way you think of a situation and staying positive are most important in keeping cool whenever you feel overwhelmed and stressful.

Featured photo credit: Brooke Cagle via unsplash.com

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