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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 November 19, 2019

20 Time Management Tips to Super Boost Your Productivity

20 Time Management Tips to Super Boost Your Productivity

Are you usually punctual or late? Do you finish things within the time you stipulate? Do you hand in your reports/work on time? Are you able to accomplish what you want to do before deadlines? Are you a good time manager?

If your answer is “no” to any of the questions above, that means you’re not managing your time as well as you want. Here are 20 time management tips to help you manage time better:

1. Create a Daily Plan

Plan your day before it unfolds. Do it in the morning or even better, the night before you sleep. The plan gives you a good overview of how the day will pan out. That way, you don’t get caught off guard. Your job for the day is to stick to the plan as best as possible.

2. Peg a Time Limit to Each Task

Be clear that you need to finish X task by 10am, Y task by 3pm, and Z item by 5:30pm. This prevents your work from dragging on and eating into time reserved for other activities.

3. Use a Calendar

Having a calendar is the most fundamental step to managing your daily activities. If you use outlook or lotus notes, calendar come as part of your mailing software.

I use it. It’s even better if you can sync your calendar to your mobile phone and other hardwares you use – that way, you can access your schedule no matter where you are. Here’re the 10 Best Calendar Apps to Stay on Track .

Find out more tips about how to use calendar for better time management here: How to Use a Calendar to Create Time and Space

4. Use an Organizer

An organizer helps you to be on top of everything in your life. It’s your central tool to organize information, to-do lists, projects, and other miscellaneous items.

These Top 15 Time Management Apps and Tools can help you organize better, pick one that fits your needs.

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5. Know Your Deadlines

When do you need to finish your tasks? Mark the deadlines out clearly in your calendar and organizer so you know when you need to finish them.

But make sure you don’t make these 10 Common Mistakes When Setting Deadlines.

6. Learn to Say “No”

Don’t take on more than you can handle. For the distractions that come in when you’re doing other things, give a firm no. Or defer it to a later period.

Leo Babauta, the founder of Zen Habits has some great insights on how to say no: The Gentle Art of Saying No

7. Target to Be Early

When you target to be on time, you’ll either be on time or late. Most of the times you’ll be late. However, if you target to be early, you’ll most likely be on time.

For appointments, strive to be early. For your deadlines, submit them earlier than required.

Learn from these tips about how to prepare yourself to be early, instead of just in time.

8. Time Box Your Activities

This means restricting your work to X amount of time. Why time boxing is good for you? Here’re 10 reasons why you should start time-boxing.

You can also read more about how to do time boxing here: #5 of 13 Strategies To Jumpstart Your Productivity.

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9. Have a Clock Visibly Placed Before You

Sometimes we are so engrossed in our work that we lose track of time. Having a huge clock in front of you will keep you aware of the time at the moment.

10. Set Reminders 15 Minutes Before

Most calendars have a reminder function. If you have an important meeting to attend, set that alarm 15 minutes before.

You can learn more about how reminders help you remember everything in this article: The Importance of Reminders (And How to Make a Reminder That Works)

11. Focus

Are you multi-tasking so much that you’re just not getting anything done? If so, focus on just one key task at one time. Multitasking is bad for you.

Close off all the applications you aren’t using. Close off the tabs in your browser that are taking away your attention. Focus solely on what you’re doing. You’ll be more efficient that way.

Lifehack’s CEO has written a definitive guide on how to focus, learn the tips: How to Focus and Maximize Your Productivity (the Definitive Guide)

12. Block out Distractions

What’s distracting you in your work? Instant messages? Phone ringing? Text messages popping in?

I hardly ever use chat nowadays. The only times when I log on is when I’m not intending to do any work. Otherwise it gets very distracting.

When I’m doing important work, I also switch off my phone. Calls during this time are recorded and I contact them afterward if it’s something important. This helps me concentrate better.

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Find more tips on how to minimize distractions to achieve more in How to Minimize Distraction to Get Things Done

13. Track Your Time Spent

When you start to track your time, you’re more aware of how you spend your time. For example, you can set a simple countdown timer to make sure that you finish a task within a period of time, say 30 minutes or 1 hour. The time pressure can push you to stay focused and work more efficiently.

You can find more time tracking apps here and pick one that works for you.

14. Don’t Fuss About Unimportant Details

You’re never get everything done in exactly the way you want. Trying to do so is being ineffective.

Trying to be perfect does you more harm than good, learn here about how perfectionism kills your productivity and how to ditch the perfectionism mindset.

15. Prioritize

Since you can’t do everything, learn to prioritize the important and let go of the rest.

Apply the 80/20 principle which is a key principle in prioritization. You can also take up this technique to prioritize everything on your plate: How to Prioritize Right in 10 Minutes and Work 10X Faster

16. Delegate

If there are things that can be better done by others or things that are not so important, consider delegating. This takes a load off and you can focus on the important tasks.

When you delegate some of your work, you free up your time and achieve more. Learn about how to effectively delegate works in this guide: How to Delegate Work (the Definitive Guide for Successful Leaders)

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17. Batch Similar Tasks Together

For related work, batch them together.

For example, my work can be categorized into these core groups:

  1. writing (articles, my upcoming book)
  2. coaching
  3. workshop development
  4. business development
  5. administrative

I batch all the related tasks together so there’s synergy. If I need to make calls, I allocate a time slot to make all my calls. It really streamlines the process.

18. Eliminate Your Time Wasters

What takes your time away your work? Facebook? Twitter? Email checking? Stop checking them so often.

One thing you can do is make it hard to check them – remove them from your browser quick links / bookmarks and stuff them in a hard to access bookmarks folder. Replace your browser bookmarks with important work-related sites.

While you’ll still checking FB/Twitter no doubt, you’ll find it’s a lower frequency than before.

19. Cut off When You Need To

The number one reason why things overrun is because you don’t cut off when you have to.

Don’t be afraid to intercept in meetings or draw a line to cut-off. Otherwise, there’s never going to be an end and you’ll just eat into the time for later.

20. Leave Buffer Time In-Between

Don’t pack everything closely together. Leave a 5-10 minute buffer time in between each tasks. This helps you wrap up the previous task and start off on the next one.

More Time Management Techniques

Featured photo credit: Unsplash via unsplash.com

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