Advertising
Advertising

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.

Advertising

“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.

Advertising

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.

Advertising

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.

Advertising

“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.

7 Things to Do in a Gossipy Work Environment 15 Signs Of Negative People 10 Reasons Why People Are Unmotivated (And Ways to Be Motivated) 10 Scientifically Proven Ways To Stay Happy All The Time Science Says Knitting Makes Humans Warmer And Happier, Mentally

Trending in Health

1 How to Manage Anxiety: Sound Advice from a Mental Health Expert 2 How to Start Eating Healthy No Matter How Old You Are 3 Understanding Intermittent Fasting Benefits: More Than Just Weight Loss 4 Top 9 Foods for Incredible Brain Health And Brain Power 5 Why Am I Not Losing Weight? 7 Reasons Revealed

Read Next

Advertising
Advertising
Advertising

Last Updated on March 13, 2019

How to Get out of a Rut: 12 Useful Ways to Get Unstuck

How to Get out of a Rut: 12 Useful Ways to Get Unstuck

Have you gotten into a rut before? Or are you in a rut right now?

You know you’re in a rut when you run out of ideas and inspiration. I personally see a rut as a productivity vacuum. It might very well be a reason why you aren’t getting results. Even as you spend more time on your work, you can’t seem to get anything constructive done. While I’m normally productive, I get into occasional ruts (especially when I’ve been working back-to-back without rest). During those times, I can spend an entire day in front of the computer and get nothing done. It can be quite frustrating.

Over time, I have tried and found several methods that are helpful to pull me out of a rut. If you experience ruts too, whether as a working professional, a writer, a blogger, a student or other work, you will find these useful. Here are 12 of my personal tips to get out of ruts:

1. Work on the small tasks.

When you are in a rut, tackle it by starting small. Clear away your smaller tasks which have been piling up. Reply to your emails, organize your documents, declutter your work space, and reply to private messages.

Whenever I finish doing that, I generate a positive momentum which I bring forward to my work.

2. Take a break from your work desk.

Get yourself away from your desk and go take a walk. Go to the washroom, walk around the office, go out and get a snack.

Your mind is too bogged down and needs some airing. Sometimes I get new ideas right after I walk away from my computer.

Advertising

3. Upgrade yourself

Take the down time to upgrade yourself. Go to a seminar. Read up on new materials (#7). Pick up a new language. Or any of the 42 ways here to improve yourself.

The modern computer uses different typefaces because Steve Jobs dropped in on a calligraphy class back in college. How’s that for inspiration?

4. Talk to a friend.

Talk to someone and get your mind off work for a while.

Talk about anything, from casual chatting to a deep conversation about something you really care about. You will be surprised at how the short encounter can be rejuvenating in its own way.

5. Forget about trying to be perfect.

If you are in a rut, the last thing you want to do is step on your own toes with perfectionist tendencies.

Just start small. Do what you can, at your own pace. Let yourself make mistakes.

Soon, a little trickle of inspiration will come. And then it’ll build up with more trickles. Before you know it, you have a whole stream of ideas.

Advertising

6. Paint a vision to work towards.

If you are continuously getting in a rut with your work, maybe there’s no vision inspiring you to move forward.

Think about why you are doing this, and what you are doing it for. What is the end vision in mind?

Make it as vivid as possible. Make sure it’s a vision that inspires you and use that to trigger you to action.

7. Read a book (or blog).

The things we read are like food to our brain. If you are out of ideas, it’s time to feed your brain with great materials.

Here’s a list of 40 books you can start off with. Stock your browser with only the feeds of high quality blogs, such as Lifehack.org, DumbLittleMan, Seth Godin’s Blog, Tim Ferris’ Blog, Zen Habits or The Personal Excellence Blog.

Check out the best selling books; those are generally packed with great wisdom.

8. Have a quick nap.

If you are at home, take a quick nap for about 20-30 minutes. This clears up your mind and gives you a quick boost. Nothing quite like starting off on a fresh start after catching up on sleep.

Advertising

9. Remember why you are doing this.

Sometimes we lose sight of why we do what we do, and after a while we become jaded. A quick refresher on why you even started on this project will help.

What were you thinking when you thought of doing this? Retrace your thoughts back to that moment. Recall why you are doing this. Then reconnect with your muse.

10. Find some competition.

Nothing quite like healthy competition to spur us forward. If you are out of ideas, then check up on what people are doing in your space.

Colleagues at work, competitors in the industry, competitors’ products and websites, networking conventions.. you get the drill.

11. Go exercise.

Since you are not making headway at work, might as well spend the time shaping yourself up.

Sometimes we work so much that we neglect our health and fitness. Go jog, swim, cycle, whichever exercise you prefer.

As you improve your physical health, your mental health will improve, too. The different facets of ourselves are all interlinked.

Advertising

Here’re 15 Tips to Restart the Exercise Habit (and How to Keep It).

12. Take a good break.

Ruts are usually signs that you have been working too long and too hard. It’s time to get a break.

Beyond the quick tips above, arrange for a 1-day or 2-days of break from your work. Don’t check your (work) emails or do anything work-related. Relax and do your favorite activities. You will return to your work recharged and ready to start.

Contrary to popular belief, the world will not end from taking a break from your work. In fact, you will be much more ready to make an impact after proper rest. My best ideas and inspiration always hit me whenever I’m away from my work.

Take a look at this to learn the importance of rest: The Importance of Scheduling Downtime

More Resources About Getting out of a Rut

Featured photo credit: Joshua Earle via unsplash.com

Read Next