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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
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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 12, 2021

100 Incredible Life Hacks That Make Life So Much Easier

100 Incredible Life Hacks That Make Life So Much Easier
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Want to learn some quick and easy life hacks that are easy to do, low cost and saves you time?

By tweaking little things in your daily life, it can make your life much more convenient!

Here’re 100 of the most practical life hacks so you can just pick up any of them right away!

83 tie a small piece of bright colored fabric

    84 write random letter

      85 use a rubberband

        86 dorm smell bad

          87 lean your phone on your sunglassess

            89 how to waterproof your shoes

              90 take a picture of the name card

                91 iron inside out

                  92 old newspaper

                    93 tumble try shoes

                      keep a card like this

                        SONY DSC

                          94 soap bar

                            95 make a hole

                              96 drop the battery

                                97 use a coozie

                                  98 when taking a picture

                                    use a clean dust pan

                                      try a pants hanger

                                        use your cellphone light

                                          use a spring from an old pen

                                            quick and easy iphone speaker

                                              user binder clips

                                                wrap a wet paper towel around your beverage

                                                  put pancake mix in a ketchup bottle

                                                    clean out an old lotion bottle for your beach

                                                      use a muffin tin to serve condiments at a bbq

                                                        doritos are great for kindling

                                                          use nail polish to identify different keys

                                                            use a hanging shoe rack to store cleaning supplies

                                                              freeze grapes to chill white wine without

                                                                use paper clips to organize your cables

                                                                  almost finished your jar of nutella

                                                                    sick of having a box full of tangled

                                                                      unroll the rim to increase the capacity

                                                                        cut open toilet paper rolls and use as a cuff

                                                                          remove the stem from strawberries

                                                                            turn an old bottle into a simple little cord holder

                                                                              for iced coffee and iced cappuccino, use frozen coffee cubes

                                                                                how to fold a fitted bed sheet

                                                                                  tired of snoozing past your alarm

                                                                                    place a rubber band around an open paint can to wipe your brush on

                                                                                      ut a wooden spoon across a boiling pot

                                                                                        use bread clips to save flip-flops

                                                                                          take pictures of friends holding items

                                                                                            how i always know which headphone is the left one

                                                                                              put a stocking over the end of a vacuum

                                                                                                How to make sure you drink enough water

                                                                                                  user a can opener to open blister

                                                                                                    good sandwich guide

                                                                                                      turn your muffin pans upside down

                                                                                                        50 pounds of groceries and living on the 5th floor

                                                                                                          the right way to make a blt

                                                                                                            add one teaspoon of baking soda

                                                                                                              38

                                                                                                                hair straighteners equals to collar irons

                                                                                                                  stack your clothes vertically to see them all

                                                                                                                    the right way to make cookies in the summer

                                                                                                                      how to clean a blender

                                                                                                                        the right way to eat a popsicle

                                                                                                                          use bread clips to label and organize power cords

                                                                                                                            to get the built up residue off of your shower head

                                                                                                                              user a hair clip to orgainize long wires

                                                                                                                                a frozen saturated sponge in a bag

                                                                                                                                  rub stuck zipper teeth with a graphite pencil

                                                                                                                                    use a soda pop tab

                                                                                                                                      50

                                                                                                                                        51 How to multiply large numbers in your head.

                                                                                                                                          52 How to open a bottle if you dont have a corkscrew.

                                                                                                                                            rub a walnut on damaged wooden furniture

                                                                                                                                              kids fall out of bed

                                                                                                                                                use toothpaste to clear up hazy car

                                                                                                                                                  58

                                                                                                                                                    59 keep pizza out while driving home

                                                                                                                                                      60 put your straw through the tab to keep it from rising

                                                                                                                                                        hold oreos with a fork so your fingers

                                                                                                                                                          Never lose your remotes again

                                                                                                                                                            hiding your emergency money

                                                                                                                                                              use a bread tab to hold your spot on a roll

                                                                                                                                                                if you are at a hotel and run out of chargers

                                                                                                                                                                  keep a square of cardboard in a ziplock bag

                                                                                                                                                                    If you need to pee or smoke at a bar

                                                                                                                                                                      drill holes in the bottom of your garbage

                                                                                                                                                                        use an accented letter as your passcode

                                                                                                                                                                          use a squeeze ketchup bottle top with your shopvac

                                                                                                                                                                            do something unusual when locking the door

                                                                                                                                                                              when heating leftovers space out a circle in the middle

                                                                                                                                                                                dont burn yourself in those hard to reach candles

                                                                                                                                                                                  put a small amount of water in a glass when you microwave your pizza

                                                                                                                                                                                    75 use a piece of paper to organize

                                                                                                                                                                                      use half a pool noodle

                                                                                                                                                                                        pencil case to store cables

                                                                                                                                                                                          78 clothespin to hold nail

                                                                                                                                                                                            79 make blts

                                                                                                                                                                                              80 take a picture of your fridge

                                                                                                                                                                                                81 fill plastic water bottles

                                                                                                                                                                                                  82 right ways to eat chips

                                                                                                                                                                                                    99 if your plug keeps failing

                                                                                                                                                                                                      100 put the banana on the wire

                                                                                                                                                                                                        88 before you throw away a post it

                                                                                                                                                                                                          Source: Reddit LifeProTips

                                                                                                                                                                                                          There you go, 100 awesome life hacks that you can try right now to make your life a lot easier!

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