World Hemophilia Day

World Hemophilia Day 2017

 

April 17th is World Hemophilia Day. On this day, people around the world will come together to raise awareness about hemophilia, with a special focus on the millions of women and girls who are affected by this debilitating disorder.

 

What is Hemophilia?

Hemophilia is a condition that stops a person’s blood for being able to clot. It is important that blood can clot, as this is how our bodies stop the bleeding from a cut. However, people with hemophilia don’t have enough clotting factors in their blood so they bleed much more excessively and for a longer amount of time than they should.

The main symptoms of hemophilia are:

  • Unexplained excessive bleeding from cuts and injuries
  • Lots of nosebleeds
  • Blood in urine and stools
  • Painful swollen joints
  • Lots of large unexplained bruises
  • Severely heavy periods
  • Irritability in infants

These symptoms can vary depending on the level of clotting factors in a person’s blood and whether they have mild, moderate or severe hemophilia.

There are currently around 6,000 people in the UK living with hemophilia, which is passed down from parents to children. The majority of these people are male as men are more at risk of inheriting hemophilia. However, females who inherit the hemophilia gene often live with additional uncomfortable symptoms such as severely heavy periods. This is why World Hemophilia Day 2017 is focusing on women living with hemophilia.

 

World Hemophilia Day

According to the World Federation of Hemophilia- the charitable organisation behind World Hemophilia Day- around one in 1,000 people around the world are living with a bleeding disorder. Unfortunately the majority of these cases are going undiagnosed and untreated. This is why it is so important for the federation to raise as much awareness as possible about hemophilia and other bleeding disorders. The overall aim of this event is to increase understanding about bleeding disorders and to increase the availability of treatment options for women in all countries.

With the help of social media and other forms of publicity, the World Federation of Hemophilia hopes that this World Hemophilia Day will be the biggest success yet.

 

How to Get Involved

There are plenty of ways you can show your support for the millions of women and girls who are living with bleeding disorders. Head over to the World Federation of Hemophilia website to make a donation or to find out about fund-raising activities that are taking place in your community. If you can’t find any events to get involved with near you, why not download a resources kit and start spreading the message of World Hemophilia Day yourself? The slogan this year is ‘Light it Up Red’ and landmarks across the globe will be lit up red in solidarity for those living with hemophilia. You could help to raise awareness in your community by contacting a local landmark and letting them know about the Light it Up Red campaign.

 

Help Living With Hemophilia

A diagnosis of hemophilia can be a difficult thing to deal with but there is help available in your local area. One of the ways in which hemophilia can affect your life is pain. Many people with bleeding conditions experience chronic pain through symptoms such as bruising and bleeding and ongoing pain in their joints and muscles. Those living with hemophilia in Berkshire can get help for these issues at The Pain Medicine Unit at the Royal Berkshire Hospital. This unit provides pain management therapies to adults with all kinds of chronic conditions.

If you are the parent of a child with hemophilia, you may be anxious about how to manage their care and what effect it may have on your child’s future. As well as receiving specialist advice from your GP and consultant, you may benefit from meeting up with other carers and getting additional support from fellow parents who are going through similar experiences as you. Non-professional carers of all kinds can benefit from a wide range of services and meet-up events offered by Bracknell Forest Carers Support Group.

In addition to these services, The Haemophilia Society regularly hold weekend events in which they provide dedicated practical and emotional support for the entire family. During these events, those with hemophilia, their parents, children or carers can speak with healthcare experts, attend information sessions and there is even a specialist crèche overseen by nurses with expertise in bleeding and clotting conditions. Locations for these special weekends vary and are held all across the UK- so get in touch with The Haemophilia Society to find out when one will be taking place in Berkshire and request a place for your family.