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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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Last Updated on January 11, 2021

11 Hidden Benefits of Using Oil Diffusers

11 Hidden Benefits of Using Oil Diffusers

Affordable, relaxing, and healthy, oil diffusers are gaining popularity with people everywhere due to their extensive benefits. Oil diffusers work through the simple process of oil diffusion, which uses heat to turn oil into a vapor that is then spread around a living space. Diffused oil can have several relaxation and health-related benefits, including safe scent-dispersion, mosquito and mold defense, stress relief, and more!

Read on for 11 hidden benefits of using oil diffusers.

1. Safe Scents That Make Sense

Unlike candles or air fresheners, oil diffusers release cleansing molecules into your air that work to purify it, not overload it with unhealthy chemicals. Electronic diffusers also do not pose the fire risk that candles do. Plus, they contain the added feature of interchangeability, which means you change oil types for different scents and health benefits.

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2. Stress Relief

Several lab studies have confirmed that diffusing essential oils like lavender have been shown to reduce stress and help relieve anxiety in medical patients. Preliminary studies have also shown that oil diffusers can help alleviate symptoms of depression.

3. Improved Sleep

Diffused oil has relaxing properties that can help people of all ages fall asleep quicker and sleep more soundly. Electronic diffusers not only have the option to mix and match different oil blends (Try a lavender, Bulgarian rose, and Roman chamomile blend to help with insomnia), they also run at a gentle hum that helps relax an agitated mind. Many also come with an auto shut-off feature to help conserve oils once you have fallen asleep.

4. Appetite Control

Much like gum, oil diffusers can help stimulate the senses in a way that works to curb appetite. New research has shown that diffused peppermint oil can help curb appetite by inducing a satiety response within the body. Diffused peppermint oil has also been shown to increase energy.

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5. Bacteria and Mold Killing

When essential oils are diffused in the air, they break down free radicals that contribute to the growth of harmful bacteria. Eucalyptus, thyme, and tea tree oils are especially good for this purpose. Diffused oil is also highly effective when it comes to combating fungal yeast threats, as the oil help makes the air inhospitable for yeasts such as mold. Pine and red thyme essential oils are best for combating mold.

6. Decongestion and Mucus Control

Ever tried Vick’s Vapo-Rub? Its decongesting powers come from active ingredients made from the eucalyptus tree. In principle, oil diffusers work the same way as Vapo-Rub, except they diffuse their decongesting vapor all around the room, not just on your chest or neck. Oil diffusers have been known to cure pneumonia in lab mice.

7. Mosquito Repellant

Nobody likes mosquitoes — but when the trade-off means using repellants full of DEET, a toxic chemical that can be especially harmful to children, mosquito control can often seem like a lose-lose. However, scientists have shown that oil diffusers can be used as a safe and highly effective mosquito repellant. Studies have shown that a diffused oil mixture containing clove essential oil and lemongrass essential oil repelled one type of Zika-carrying mosquito, the Aedes aegypti mosquito, at a rate of 100%.

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8. Pain Relief

While applying oils directly to areas of your body may be the most effective way to alleviate pain, diffusing essential oils can also be an effective means of pain relief. When we inhale healthy essential oils, they enter our blood stream and can help internally relieve persistent pain from headaches, overworked muscles, and sore joints.

9. The New Anti-Viral

Research into the anti-viral effects of oil diffusion is now just gaining steam. A recent study showed that star anise essential oil was proven in medical experiments to destroy the herpes simplex virus in contained areas at a rate of 99%. Another study showed the popular DoTerra oil blend OnGuard to have highly-effective influenza-combating powers.

10. Improved Cognitive Function

Diffusing essential oils has also been shown to improve cognitive function. Many essential oils have adaptogenic qualities, which can work twofold in soothing us when we’re stressed, and giving our bodies a pick-me-up when we’re feeling down or sluggish. By working to level out an imbalanced mood, diffused oils also help us to focus. There are also several essential oils which have been shown to help balance the body’s hormones. With prolonged use, these oils can work to repair the underlying causes responsible for hindering cognitive function.

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11. Money Saving

With ten clear benefits of oil diffusers already outlined, there is one more that should now be obvious: using an oil diffuser will help you to save money. As an anti-viral, bug repelling, and stress-relief solution rolled into one safe product, an oil diffuser used with the proper oils will save you money on products you might otherwise be buying to help cure those pesky headaches or get your kids to fall asleep on time. If you’re wondering just how affordable oil diffusers can be, check the buyer’s guide to the best oil diffusers — you’ll be sure to find one that fits your budget!

Featured photo credit: Jopeel Quimpo via unsplash.com

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