What is World Hemophilia Day?
The World Federation of Hemophilia (WFH) observes an annual meeting worldwide on the 17th of April every year for the cause of hemophilia patients.
The day is aimed at spreading awareness about the disease, related disorders that involve unevenly profuse bleeding in humans.
The event also encourages volunteers and non profitable organizations to raise funds for the world federation of hemophilia that has been remarkable in its working of this disease.
Incidentally, the day is also an observance of the birthday of Frank Schnabel. The day was first celebrated on April 17, 1989 after which it became a worldwide movement.
Worldwide, 1 in every 10,000 person is estimated to be suffering from this disease. The day is aimed at spreading knowledge and information to member nations, healthcare professionals and to families and patients suffering from bleeding disorders about everything related to tackling the disease.
The most important aspect of providing good access to timely care and treatment to persons with bleeding disorders is the main idea behind celebrating the day.
There are global communities that help cater to providing good information on both preliminary and secondary levels, increasing awareness about dealing with emergency situations.
These vital corners and aspects are handled with great expertise and light thrown on first hand care and treatment.
World Hemophilia Day 2018
The 28th world hemophilia day will be observed on Tuesday, the 17th of April, 2018. The official website of the world federation of hemophilia observes this day by propaganda through various means.
The WFH conducts various activities on this day to encourage people to become more aware about this disease. The disease is commonly associated with platelet disorders, rare bleeding disorders and disorders that occur due to genetic modifications.
All these disorders associated with uneven and profuse bleeding, excessively are inherited and are caused by mutational aspects. ‘Spreading the word’ is the central theme of world hemophilia day celebration 2018.
The day aims at providing valuable information and training to health care experts regarding the right diagnosis of the disease, handling emergencies and providing critical care. Throughout the world many patients are suffering from this disease but do not know whom to approach for the right kind of treatment.
Even if they did, they would be denied access to good treatment methodologies. So, here is a global organization that will cater to the needs of member countries by providing them treatment tools and safe methodologies to administer during treatment procedures.
The patients who are suffering from this disease generally lack the ability to lead a normal lifestyle, given the specific threats of the disease.
So, in order to motivate patients and help them come out of their shells, the organization will conduct awareness programs on this day to help patients better deal with the disease, help them lead close to normal lifestyles and choose health preferentially over anything else.
So the day focuses on the health and well being of hemophilia patients on a global scale.
World Hemophilia Day Celebration
The world hemophilia day is not a day where celebrations mean having parties or enjoying the day with music beats and dance. The day is meant to spread awareness about the disease. It is interesting to know that most of the patients suffering from this disease are unaware about its consequences themselves.
In worst cases, the patient may not even be diagnosed properly with the presence of the disease. So treatment becomes a secondary thing and may not reach the right kind of people. So, on this day celebration generally refers to reaching out to as many people possible with helping hands.
The mission of WFH is to make available treatment to maximum number of people possible. That is, they aim to reach out to the maximum number of patients through their awareness programs and help motivate them to lead normal lives like others.
Individual nations will get proper insights on management and handling of disease comprehensively. In order to reach out to maximum patients possible, the organization provides high level training to expert teams guides them and monitors their services.
The services are aimed at expansion at the global level. There is absolutely no worth in spreading the word remotely in their own functional area. The goal is to reach every remote patient and help him sustain through the disease and lead a long healthy life as far as possible.
Delivery of implements and to sustain medical expenses and cover treatment costs, the organization funds needy people. It provides cost-effective treatment through its member nations. All these aspects would be brought into the open by effectively spreading messages through social media, demonstrations, rallies etc.
Highlight of World Hemophilia Day 2017 Theme
The theme of world hemophilia day 2017 was “Hear their voices”. Worldwide lakh of patients are silently suffering from hemophilia disorders.
The disease has two internal types within it and the second one among the two occurs very rarely. Though the nature of the disorder itself is pretty rare, the occurrence cannot be ruled out.
If a family has a person suffering from this disorder but has not sought any significant medical help, the situation becomes unpredictable when the patient starts responding differently to varied situations. In case a patient has a small fall, he would become prone to profuse bleeding.
Excessive and uncontrolled bleeding will soon drain all the blood from his body and that may result in the premature death of a person.
In case the family was aware about his condition beforehand and they had good access to treatment facilities, they could avert dangers of a likely unpredictable situation.
They could administer timely treatment and seek the right kind of medical help and approach medical facilities. This could save the life of a patient.
So, the theme of 2017 focused on hearing the words, the experiences, the anxieties, and the pain the patients were going through when they suffered from this disease.
How they felt to be different from normal individuals, how best they tried to lead a normal lifestyle, what efforts they put in to be stay motivated, all put in a nutshell was the point of focus of 2017.
World Hemophilia day Importance and Significance
Hemophilia is a rare genetic disease that affects both men and women alike. It includes inherited bleeding disorders, disorders due to rare occurrences in the genetic chain, mutational disorders, internal bleeding issues etc.
For a person suffering from hemophilia, blood does not clot easily. In other words, if we had a small fall on the ground, we would probably have little bruises on our knee and may have small amounts of bleeding in that region. As soon as blood starts to clot, the bleeding would stop.
This is not the case with patients suffering from hemophilia. Even a small cut would render them bleeding profusely, so they ought to be very careful with their movements. Even a small injury will lead in heavy blood loss at times. Blood does not clot easily and they usually tend to bleed for a very long time.
The sad part is that, though there have been numerous advancements in science and technology, there is really no cure at hand even in the most developed nations for this disorder. Lakh of people have been affected by this disease.
The significance and importance of the day
- To have open discussions with family and friends, peer groups and communities regarding the disease, spread information and awareness about the disease. It is an inherited disorder and could affect anyone. So, an overall knowledge about the disease is sought after.
- To reach out to the public in large numbers about the existence of the disease. Most of the patients and their families do not know themselves about seeking help, the right people to approach and treatment procedures and costs. So, public awareness campaigns are effective tools on this day.
- Volunteers and non-government organization workers are specially targeted to improve their level of knowledge about the disease.
- Healthcare experts are provided counseling sessions to better tackle and manage the disease.
- The day is also important from a fund raising point of view and hence contributions and donations are part of the worldwide event.
World Hemophilia Day Quotes
- “Persons with inherited bleeding disorders need support and require to be heard”.
- “Join hands and support our mission on world hemophilia day, it counts”.
- “ Inspire others, extend your care and support for hemophilia patients”
- “Create a change in the world; bring about awareness on world hemophilia day”.
- “Assist, build a network and reach out to hemophilia patients, they truly deserve care and support”.
World Hemophilia Day Slogans
- “Contribute to the bleeding disorders community; join hands in their fight against hemophilia”.
- “It could be me, it could be you or anyone else, never stop rendering your support for hemophilia patients”.
- “Love, care and support- spread and provide motivation on world hemophilia day”.
- “Bleeding disorders are not the end of the world; you could still lead a normal life”.
- “Inherent bleeding disorders could mean pre-mature deaths; access to treatments could provide longevity”.
In a world full of unpredictable turns, almost every person suffers from minor or major ailments.
It could be related to his lifestyle, to his genetic conditions, etc. spreading messages and improving our knowledge of specific diseases helps us improve our chances of leading normal lives and maintain happiness on our faces and extend longevity by a step further.