organized by WFH since 1989. WFH is an international non-profit organization, officially recognized by the World Health Organization (WHO), for providing global leadership in improving lives survival of people with hemophilia and other genetic diseases.
among others.
It was founded in 1963 by Frank Schnabel, with headquarters in Montreal, Canada. It has branches in over 140 countries, including India, Canada, UK, USA and EU countries, among many others. WFH’s vision is to ensure “Treatment for All” so that everyone everywhere with an inherited bleeding disorder has access to consistent quality treatment.
2022 Theme for World Hemophilia Day
The theme of this year’s World Hemophilia Day is “Access to All: Partnerships. Policy. Progress. Engage with your government, integrating genetic bleeding disorders into national policy.”
Duration “Access For All” refers to all the people around the world who are suffering from “hemophilia.” Terms “Partnership”, “Policy” and “Progress” refers to their access to hospital admissions and costs.
Like many other diseases, COVID-19 has had a major negative impact on the lives of people with hemophilia and other inherited bleeding disorders. So this year’s theme celebrates the resilience of these remarkable individuals in the face of enormous challenges. Therefore, overcoming challenges and adapting to a changing world is the essence of this year’s celebration.
Need Government involvement
This year’s theme is “Access for all.” WFH, with the support of volunteers from all over the world, has done remarkable work with developing countries. WFH estimates that more than 75% of people living with hemophilia worldwide remain unidentified and undiagnosed.
So they developed an “Advocacy Toolkit” for governments to understand and respond to policies and policymakers to include the disease in their current list of diseases because of the cost. Hospitals are often very large for patients with hemophilia.
The “One Pager” and “Press Release” documents must be signed by government officials and published to the local and global press.
Hemophilia – Basic knowledge
Hemophilia is an inherited condition in which bleeding does not easily stop. When a normal person starts bleeding from an injury, physiological mechanisms in the body ensure that it stops bleeding 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-coagulate blood into a gel form to form a knot at the wound, preventing blood from seeping out. This mechanism is called blood clotting.
In the case of hemophilia, these essential clotting factors are absent or present in very low levels, resulting in prolonged bleeding. In this context, it should be borne in mind that bleeding is not always external.
Internal bleeding can also happen. In this case, the hemophilia patient can spontaneously bleed into the joints and muscles without suffering any external damage. If left untreated, over time, internal bleeding can lead to serious complications, such as chronic pain, arthritisand disability.
Transmission of hemophilia
The faulty gene that causes hemophilia is passed down generations from parent to child. Fathers often pass genes to daughters but not to sons, and mothers pass on to both sons and daughters, but it is the son who manifests the disease.
How to Celebrate World Hemophilia Day
WFH encourages community members, partners and national member organizations (NMOs) to engage with the virtual community on April 17 and let your voice be heard! You can do this by posting your personal stories and words of encouragement and hope on social media. WFH is active on Facebook, Twitter and LinkedIn. People would love to hear from you on those platforms (first✔ ✔Trusted Source
Hemophilia
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). Many events are held every year to mark World Hemophilia Day. The primary goal of these events is to raise awareness about the disease and the people who suffer from it. Here are some ideas to celebrate World Hemophilia Day:
Use the following hashtags on social media to start or join a conversation using WFH
- #WorldHemophiliaDay
- # WHD2022
- #LightItUpRed
Change your profile picture and light it up red
- Download the World Hemophilia Day Facebook banner or frame and light yourself up red!
- Wear something red at home and post selfies on social media
- Challenge your colleagues or schoolmates to post a photo of themselves in red for the day — or post a collage of everyone in your organization wearing red!
- Post pictures of landmarks you see lit up red on social media
Notify
- Share this year World Hemophilia Day website
- Like, share and repost Posts related to WFH Hemophilia Day on social media
- Share Official poster of World Hemophilia DayOur share World Hemophilia Day resources on your website or through social media Use correspondence from WFH (available in three languages) to contact a local landmark and ask if they can Light it up red.
You can also reach out to government officials and policymakers on World Hemophilia Day.
Here are some ideas to celebrate World Hemophilia Day:
- Campaign Document: You can download posters, banners, sliders, email signatures, logos etc that can be translated and modified to fit your campaign needs. It was originally written in three languages: English, French and Spanish (first✔ ✔Trusted Source
Hemophilia
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). - Awareness spreads: Even in these difficult times, there is still much we can do to spread awareness. For example, we can use social media like Facebook, LinkedIn, Twitter and use hashtags like #AccessForAll, #Hemophilia, #WHD2022, #Closethegap or #HearTheirVoices to spread far and wide (2✔ ✔Trusted Source
World Hemophilia Day †“Outreach
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). - Share your story: You can share your story of how you or anyone you know has had an inherited bleeding disorder, and read the stories of others in this global community. In fact, the official World Hemophilia Day website (www.worldhemophiliaday.org) has an option to do so (first✔ ✔Trusted Source
Hemophilia
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). - Light It Up “Red”: Since red represents the color of blood, wearing red clothing and accessories can be an ideal way to show solidarity towards people with hemophilia and bleeding disorders other genetics.
- Donate: People can donate anything they can to raise funds to bring smiles to innocent, needy children who are silently suffering from this terrible disease.
Health tips to prevent hemophilia
- An annual physical exam from a specialized clinical laboratory will detect any problems early so that preventive measures can be taken in time.
- Vaccination Hepatitis A and Hepatitis B is an effective prevention strategy
-
Bleeding need prompt, complete and timely treatment - Exercise and maintain healthy body weight very important to protect the joints, especially the knee joint
- Tested for blood-borne pathogens Regular can be effective as a preventive measure
Hemophilia – Some facts and figures
- Hemophilia occurs in all races, ethnicities and socioeconomic groups
- Hemophilia affects 1 in 10,000 people worldwide
- Hemophilia occurs in 1 in 6,000 to 10,000 men worldwide
- There are two types of hemophilia – hemophilia A (classical) and hemophilia B (Christmas disease)
- 1 in 6,000 men has hemophilia A
- 1 in 25,000 to 30,000 men has hemophilia B
- A total of 75% to 80% of people with a blood disorder don’t know they have it
- Mean age at diagnosis of hemophilia in children ranged from 1 month (severe illness) to 36 months (mild illness).
- There is currently no cure for hemophilia. An important treatment for hemophilia is clotting factor replacement, which the patient needs to be given through a tube in a vein.
- Two-thirds of children with hemophilia are born into families with a history of the disease
- One-third of children with the mutation are born into families with no history of the disease
World Hemophilia Day brings together the entire global community living with hemophilia and other bleeding disorders. Therefore, it is more important to bring everyone together on a single platform and let “Access for all.”
Presenter:
- World Hemophilia Day 2022: Adapting to Change, Maintaining Care in a New World – World Federation of Hemophilia (WFH) – (https://wfh.org/world-hemophilia-day)
- World Haemophilia Day 2022 – (https://www.haemophilia.org.au/events-and-conferences/events/world-haemophilia-day-2022)
Source: Medindia
