World Lipodystrophy Day: Why Is It Celebrated?
Lipodystrophy is a rare disease that deserves attention so that those affected receive effective treatment. Your world day reminds us that efforts must continue.
Rare diseases are a pending account of most health systems on the planet. This time we focus on lipodystrophy, which is a pathology with an incidence of 4.7 cases per million inhabitants. Such a figure has led to slow progress in its treatment, which increases the importance of World Lipodystrophy Day.
The day selected for the commemoration is March 31. In this way, its elementary motives are entrepreneurship, awareness, exposure and the creation of strategic alliances that facilitate pressure on state actions in different areas of the world.
To understand in greater detail the impact of World Lipodystrophy Day, we will review what it is, the objectives of its commemoration, the activities, the importance of giving it visibility and how it is possible to contribute.
What is lipodystrophy?
Lipodystrophy is a disease that affects adipose tissue. In other words, it causes the distribution of fat in different areas of the body to be uneven.
How does this abnormality affect? To begin with, we must determine the importance of fatty tissue in the body. One of its essential functions is energy storage. It also has an influence on metabolic balance. In this sense, those who suffer from lipodystrophy see this adipose quality reduced.
All this makes the body look for other organs to house the necessary fat. For this reason, the concept of ectopic fat appears, which is defined as that which accumulates outside the adipose tissue itself.
Continuing, ectopic fat – for people with lipodystrophy – affects the pancreas, liver and some muscles in a majority way.
Therefore, the detrimental outcome is in all the deficiencies that said ectopic fat can promote. Among the major disturbances we can mention the following:
- Diabetes.
- Inflammation of the liver
- Subfertility (inability to achieve pregnancy after 1 year of attempts).
- High triglycerides in the blood.
- Increased risk of heart disease.
- Lactic acidosis.
- Lipomas
Celebration of World Lipodystrophy Day
As we mentioned, the date on the calendar for the celebration of World Lipodystrophy Day is March 31. The staging had as its starting point the year 2013; since then, development has not stopped.
The event is possible in each new season thanks to the International Association of Relatives and People Affected by Lipodystrophies (AELIP), which works together with other organizations, such as the European Organization for Rare Diseases (EURORDIS) and the Spanish Federation of Rare Diseases (FEDER) , among other.
Objectives of the day
The objectives of the day are the keys to define and measure the evolution that is achieved in each celebration. Indeed, the goals that have been pre-established go through the following points:
- Raise awareness about lipodystrophies and the limitations that exist for their treatment.
- Raise awareness about the deterioration in the quality of life of those affected.
- Reduce the social distance that has been created.
- Report on the differentiation of lipodystrophies compared to other diseases.
- Obtain financial resources from various efforts so that patients acquire the necessary treatment.
- Motivate governments to allocate resources to research.
Performed activities
Before each new event, a meeting is held to coordinate the changes to the celebration and the activities to be carried out. Among the initiatives that should be incorporated are the following:
- Improvement of the existing manifesto of World Lipodystrophy Day with ideas from patient associations.
- Social media campaign with a fixed hashtag : # WorldLypodistrophieDay , which will only modify the year for each event.
- Application of the additional label # United4Lypodistrophie . Translation in any language is accepted.
- Charity events to raise funds. This activity has been established for when sanitary conditions worldwide allow it.
- Information days.
Why is it important to highlight lipodystrophies?
Highlighting lipodystrophies is important because it puts relevant research and development on the public investment map to get a deep understanding of how the disease works. On the other hand, it confers greater possibilities of social adaptation to those affected.
It also ensures that patients with lipodystrophy have access to medications that improve their quality of life. Finally, as it is a disease of which little is known, emphasizing it globally means that a greater number of people can access up-to-date information.
How can I contribute to World Lipodystrophy Day?
All gestures are well received by those who struggle day after day with lipodystrophy. In the same way, there are characteristic contributions that enhance World Lipodystrophy Day from any location on the globe.
Among the options are the following:
- Posting a photo: the ideal is to upload a snapshot making the “L” sign, which identifies support for those who are facing lipodystrophy.
- Use the tags: write a message of support on social media with the tags #WorldLypodistrophieDay and # United4Lypodistrophie.
- Get the support of a famous person: if you have a friend of great recognition in the locality or worldwide, a great contribution would be to get them to make a video with a message of strength.
- Send a drawing: it is possible to dedicate a drawing to the sick using the official template. You just have to download it and, when it is ready, upload it on the networks.
- Replicate the manifesto: share and send the official manifesto of World Lipodystrophy Day to demonstrate the broad requirements.
World Lipodystrophy Day to not discriminate
The integration of lipodystrophies in public health systems is one of the major goals that we seek to promote each year. To this end, perseverance is bearing fruit, but substantial progress is lacking.
Therefore, and as long as total guarantees are not given to the sick, it is recommended to include them in society and eliminate the distancing that is based on discrimination.
Any time of the year is accepted if the intention is to show empathy and make a gesture that can change lives. Ultimately, the fight so that no one is left behind continues. Be part of the change!
