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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 July 18, 2019

10 Small Changes To Make Your House Feel Like A Home

10 Small Changes To Make Your House Feel Like A Home

Your house is more than just a building that you live in. It should be a home that makes you feel welcome as soon as you open the front door.

Making your house feel like a home is not something that simply happens on its own. You need to make some changes to a house when you move in, to give it that cozy, warm feeling that turns it into a true home. To help you speed the process, follow this guide to 10 small changes to make your house feel like a home.

1. Make the Windows Your Own

When you move into a home, they often come with boring Venetian blinds or less than attractive curtains.

One of the best ways you can instantly warm your home and make it showcase your style is to add some new window dressing. Adding beautiful curtains not only improves your home’s appearance, but it can also help to control the temperature.

2. Put up Some Art

If you have a lot of bare walls in your home, it will seem sterile no matter how beautiful your paint or wallpaper is.

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Hanging art on the walls will instantly give it personality and make it feel like home.

3. Improve the Aroma

A house that is not filled with inviting smells will never feel like a home. There are loads of ways you can make your home smell nice. There are tons of air fresheners on the market you can use.

Incense and scented candles are a nice option as well. Don’t forget that baking in a home is also a great way to fill it with an aroma that instantly smells like home as soon as you open the front door.

4. Put out Lots of Pillows and Throws

A great way to make your home look warm and inviting is to place lots of pillows and throws out on the furniture. It is much better to have too many pillows than not enough.

There is nothing like the feeling of sinking into a cushiony pillow that feels like a cloud to make you feel like you are at home.

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5. Instantly Class up Your Closet

If your closet is filled with wire or plastic hangers, it will never truly feel homey. To instantly make your closet feel classy, change out your old hangers for wooden ones.

Not only do they look great, but they are better for hanging your clothes as well.

6. Improve Your Air Quality

One of the most overlooked ways to make your house feel more like a home is to improve its air quality.

The easiest and best way to upgrade the air quality in your home is to change the old, dirty filters in your furnace regularly. Get some air filters delivered to your home so that you always have some on hand.

7. Fill it with Plants

Another way to improve the air quality in your home is to fill it with plants. You should have plants in every room of your home.

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They help to improve the air quality and they look beautiful. As well as making your home appear homier, plants also help to boost your mood and lower your stress levels.

8. Change the Doorknobs

Most people don’t really give their doorknobs a second thought unless they are broken. That is a shame because changing your doorknobs is an easy way to add personality to your home.

Changing your old, boring doorknobs to new ones that are works of art will instantly brighten your home.

9. Upgrade Your Tub or Shower

There is nothing like luxuriating in a whirlpool bath or steam shower to make the cares of the day melt away. Your family deserves a bit of luxury when they are in their bathroom.

Install a new shower or tub today to make your bathroom worthy of a place in your home.

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10. Fresh Cut Flowers

You can make any room in your house feel homier by placing a vase full of beautiful flowers in it. The gorgeous look and intoxicating aroma of fresh cut flowers will immediately brighten your day when you encounter them.

You don’t have to make all these changes at once. Try one or two a day though, and your house will feel like a home before you know it. The trick is to constantly keep adding these homey touches to make your home a place worthy of its name.

Featured photo credit: https://www.pexels.com/photo/black-wooden-round-analog-wall-clock-on-brown-wooden-wall-121537/ via unsplash.com

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