Much like many other diseases, COVID-19 has had a huge negative impact on the lives of people suffering from hemophilia and other inherited bleeding disorders. So, this year’s theme celebrates the resilience of these remarkable individuals in the face of enormous challenges. Hence, overcoming the challenges and adapting to a changing world is the essence of this year’s celebrations.

Need for the Government to Take Part

The theme for this year is “Access for All.” WFH, with the support of volunteers from around the world, does remarkable work with developing countries. WFH estimates that over 75% of people living with hemophilia worldwide have not yet been identified and diagnosed.

So, they have developed the “Advocacy Toolkit” for the government to understand and react on the policies and policymakers to include the disease in their current list of diseases as the hospital expenses were usually huge for patients with the hemophilia disease.

“One-pager” and “Press Release” documents must be signed by the government officials and released to the local and global press.

Hemophilia — The Basics

Hemophilia is an inherited condition in which bleeding doesn’t stop easily. When a normal person starts to bleed from an injury, physiological mechanisms in the body ensure that it stops as quickly as possible.

This is brought about by protein molecules called clotting factors present in the blood. The function of these molecules is to semi-solidify the blood into a gel so that it forms a plug at the wound site, which stops the blood from seeping out. This mechanism is called blood clotting.

In the case of hemophiliacs, these essential clotting factors are absent or present in very low levels, because of which bleeding is prolonged. In this context, it should be noted that bleeding is not always external.

Internal bleeding can also occur. In this case, hemophilic patients may have spontaneous bleeding into joints and muscles, without sustaining any external injury. If left untreated, over time, internal bleeding can lead to serious complications, such as chronic pain, arthritis, and disability.

Hemophilia Transmission

The faulty gene that is responsible for hemophilia is passed down the generations from parent to child. Fathers usually pass the gene on to their daughters, but not to their sons and mothers pass it on to both their sons and daughters, but it is the sons who manifest the disease.

Ways to Celebrate World Hemophilia Day

WFH encourages members of the community, partners, and national member organizations (NMOs) to engage with the community virtually on April 17th and let your voice be heard! You can do this by posting your personal stories and your words of encouragement and hope on social media. The WFH is active on Facebook, Twitter, and LinkedIn. People would love to hear from you on those platforms (1^✔ ✔Trusted Source
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Numerous events are organized every year to mark World Hemophilia Day. The basic objective of these events is to promote awareness about the disease and those who suffer from it. Some ideas for celebrating World Hemophilia Day are highlighted below:

Use the following hashtags on social media to start or join the conversation by WFH

• #WorldHemophiliaDay
• #WHD2022
• #LightItUpRed

Change your profile picture and Light It Up Red

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  Download the World Hemophilia Day Facebook banner or Facebook frame and light yourself up red!
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  Wear something red at home and post a selfie on social media
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  Challenge your coworkers or schoolmates to post a picture of themselves wearing red for the day—or post a picture collage of everyone in your organization wearing red!
• Post pictures of landmarks you see lit up in red on social media

Spread the word

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  Share this year’s World Hemophilia Day website
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  Like, share, and retweet WFH Hemophilia Day-related posts on social media
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  Share the World Hemophilia Day official posterShare our World Hemophilia Day resources on your website or through social mediaUse the letter from WFH (available in three languages) to contact a local landmark and ask if they can Light it up Red.

You could also contact the government officials and policy makers on the occasion of World Hemophilia Day.

Some ideas for celebrating World Hemophilia Day are highlighted below:

• Campaign Materials: You can download posters, banners, sliders, e-mail signatures, logos, and so on that can be translated and modified to fit your campaign needs. Originally, it is written in three languages: English, French, and Spanish (1^✔ ✔Trusted Source
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• 
  Spread Awareness: Even in these hard times, there is still much we can do to spread awareness. For example, we can take to social media like Facebook, LinkedIn, Twitter, and use hashtags like #AccessForAll, #Hemophilia, #WHD2022, #Closethegap, or #HearTheirVoices to spread the word far and wide (2^✔ ✔Trusted Source
  World Hemophilia Day — Reaching Out
  

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  Share your Story: You can share your story about how you or anyone who you know has suffered from inherited bleeding disorders, and read the stories of other people in this global community. In fact, the official World Hemophilia Day website (www.worldhemophiliaday.org) has an option to do just that (1^✔ ✔Trusted Source
  Hemophilia
  

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  ).

• 
  Light It Up “Red”: Since red signifies the color of blood, so wearing red-colored apparels and accessories can be an ideal way to show solidarity for people suffering from hemophilia and other inherited bleeding disorders.
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  Donate: Everyone can chip in to donate whatever they can to raise funds for bringing a smile to the faces of innocent, deprived children who suffer silently from the dreadful disease

Health Tips to Prevent Hemophilia

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  Getting a thorough annual check-up from a specialized clinical lab will detect any problems at an early stage so that timely preventive measures can be taken
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  Getting vaccinated against Hepatitis A and Hepatitis B is an effective preventive strategy
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  Bleeding should be treated quickly, adequately, and in a timely manner
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  Exercising and maintaining healthy body weight is important for protecting the joints, especially the knee joints
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  Getting tested for blood-borne pathogens regularly may be effective as a preventive measure

Hemophilia — Few Facts and Figures

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  Hemophilia is present across all races, ethnicities, and socioeconomic groups
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  Hemophilia affects 1 in 10,000 people worldwide
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  Hemophilia occurs in 1 in 6,000 to 10,000 males worldwide
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  There are two types of hemophilia – hemophilia A (classical) and hemophilia B (Christmas disease)
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  1 in 6,000 males have hemophilia A
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  1 in 25,000 to 30,000 males have hemophilia B
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  A total of 75% to 80% percent of people with a blood disorder don’t know that they have it
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  Average age of diagnosis of hemophilia in children ranges between 1 month (severe disease) to 36 months (mild disease)
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  There is currently no cure for hemophilia. The key treatment for hemophilia involves replacing the clotting factor the patient needs administered through a tube in the vein.
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  Two-thirds of children having hemophilia are born to families with a history of the disease
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  One-third of children with a mutation are born to families without a history of the disease

World Hemophilia Day brings together the entire global community living with hemophilia and other bleeding disorders. Hence, it is even more important to bring everyone together on a single platform and give “Access for All.”

References:

1. World Hemophilia Day 2022: Adapting to Change, Sustaining Care in a New World – World Federation of Hemophilia (WFH) – (https://wfh.org/world-hemophilia-day)
2. World Haemophilia Day 2022
   – (https://www.haemophilia.org.au/events-and-conferences/events/world-haemophilia-day-2022)

Source: Medindia