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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 March 24, 2021

8 Smart Home Gadgets You Need in Your House

8 Smart Home Gadgets You Need in Your House

We’ve all done it. We’ve gone out and bought useless gadgets that we don’t really need, just because they seemed really cool at the time. Then, we are stuck with a bunch of junk, and end up tossing it or trying to sell it on Ebay.

On the other hand, there are some pretty awesome tech inventions that are actually useful. For instance, many of the latest home gadgets do some of your work for you, from adjusting the home thermostat to locking your front door. And, if used as designed, these tools should really help to make your life a lot easier—and that’s not just a claim from some infomercial trying to sell you yet another useless gadget.

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Take a look at some of the most popular “smart gadgets” on the market:

1. Smart Door Locks

A smart lock lets you lock and unlock your doors by using your smartphone, a special key fob, or biometrics. These locks are keyless, and much more difficult for intruders to break into, making your home a lot safer. You can even use a special app to let people into your home if you are not there to greet them.

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2. Smart Kitchen Tools

Wouldn’t you just love to have a pot of coffee waiting for you when you get home from work? What about a “smart pan” that tells you exactly when you need to flip that omelet? From meat thermometers to kitchen scales, you’ll find a variety of “smart” gadgets designed to make culinary geeks salivate.

3. Mini Home Speaker Play:1

If you love big sound, but hate how much space big speakers take up, and if you want a stereo system that is no bigger than your fist, check out the Play:1 mini speaker. All you have to do is plug it in, connect, and then you can stream without worrying about any interruptions or interface. You can even add onto it, and have different music playing in different rooms.

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4. Wi-Fi Security Cameras

These are the latest in home security, and they connect to the Wi-Fi in your home. You can use your mobile devices to monitor what is going on in your home at all times, no matter where you are. Options include motion sensors, two-way audio, and different recording options.

5. Nest Thermostat

This is a thermostat that lives with you. It can sense seasonal changes, temperature changes, etc., and it will adjust itself automatically. You will never have to fiddle with a thermostat dial or keypad again, because this one basically does all of the work for you. It can also help you to save as much as 12% on heating bills, and 15% on cooling bills.

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6. Smart Lighting

Control your home lighting from your remote device. This is great if you are out and want to make sure that there are some lights on. It is designed to be energy efficient, so it will pay for itself over time because you won’t have to spend so much on your monthly energy bills.

7. Google Chromecast Ultra

Whether you love movies, television shows, music, etc., you can stream it all using Google Chromecast Ultra. Stream all of the entertainment you love in up to 4K UHD and HDR, for just $69 monthly.

8. Canary

This home security system will automatically contact emergency services when they are needed. This system offers both video and audio surveillance, so there will be evidence if there are any break-ins on your property. You can also use it to check up on what’s happening at home when you are not there, including to make sure the kids are doing their homework.

Featured photo credit: Karolina via kaboompics.com

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