Why Is World Lipodystrophy Day Celebrated?

Lipodystrophy is a rare disease that deserves our attention so that sufferers receive effective treatment. His World Day reminds us that efforts must continue.

Rare diseases are an unfinished business for most of the world’s health systems. Today, we are focusing on lipodystrophy,  a condition with an incidence of 4.7 cases for every million inhabitants. 

Such a figure has led to slow progress in treatment. This further increases the importance of World Lipodystrophy Day.

The day chosen for the celebration is March 31. On the other hand, the main objectives are entrepreneurship, awareness, exposure as well as the creation of strategic alliances which facilitate the pressure on the actions of the State in different regions of the world.

To understand more deeply the impact of World Lipodystrophy Day, we will review what the disease consists of, the objectives of this commemoration, the activities, the importance of giving it visibility and the means to do so. to contribute.

What is lipodystrophy?

Lipodystrophy is a disease that affects fatty tissue. In other words, it causes an irregular distribution of fat in different areas of the body.

What are the affections of the disease? First of all, it is essential to determine the significance of fatty tissue. One of its main functions is the storage of energy. It also influences the metabolic balance. In this sense, patients who suffer from lipodystrophy see this reduced fat quality.

Therefore,  the body searches for other organs to store the necessary fat. Hence the emergence of the concept of ectopic fat, which is defined as the fat that accumulates outside of adipose tissue itself.

Then, ectopic fat – for people with lipodystrophy – mainly affects the pancreas, liver and certain muscles. The harmful outcome therefore lies in all the shortcomings that this ectopic fat can promote.

Among the main disturbances we can mention the following:

• Diabetes.
• Inflammation of the liver.
• Subfertility (inability to achieve pregnancy after a year of trying).
• High blood triglycerides.
• Increased risk of heart disease.
• Lactic acidosis.
• Lipomas.

Celebration of World Lipodystrophy Day

As we mentioned, the date set on the calendar for the commemoration of World Lipodystrophy Day is March 31st. The starting point dates back to 2013. Since then, the development has not stopped.

The event is made possible every year thanks to the Association of Families and People Affected by Lipodystrophy (AELIP),  which collaborates with other organizations such as the European Organization of Rare Diseases and the Spanish Federation of Rare Diseases, among others. .

Objectives of this day

The objectives of the day are the key to define and measure the progress achieved during each celebration. Here are these objectives followed:

• Raise public awareness of lipodystrophy  and the limits that exist for its treatment.
• Raise awareness of the deterioration in the quality of life of those affected.
• Reduce the social distance that has been created.
• Provide information on the differentiation of lipodystrophy  from other diseases.
• Obtain financial resources through various actions so that patients have recourse to the necessary treatment.
• Motivate governments to allocate resources  for research.

jobs done

Before each new event, a meeting is organized to coordinate changes in the celebration as well as the activities to be carried out. Within the initiatives, we can cite the following:

• Refinement of the existing manifesto for World Lipodystrophy Day with ideas from patient associations.
• Campaigns on social networks with a fixed hashtag: #WorldLypodistrophieDay , which will only change at each next event.
• Application of the additional hashtag # United4Lypodistrophie . Translation into any language is accepted.
• Charitable fundraising events. 
• Information days.

Why is it important to give this place to lipodystrophy?

Highlighting lipodystrophy is essential because it allows research and development to be placed on the map of public investment, allowing a better understanding of how the disease works. In addition, it offers the people concerned greater possibilities for social adaptation.

The actions also ensure that  patients have access to medicines that improve their quality of life. Finally, as it is a disease about which we know very little so far, highlighting it globally allows more people to access up-to-date information.

How to contribute to World Lipodystrophy Day?

All gestures are welcome for those who fight day after day against lipodystrophy. Likewise, there are different contributions that celebrate this day from anywhere in the world.

Among these options we find:

• Posting a photo: Ideally, post a photo with the “L” sign that identifies support for people with lipodystrophy.
• Use hashtags: write a message of support on social media with the hashtags #WorldLypodistrophieDay and # United4Lypodistrophie .
• Get Celebrity Support: If you have a friend who is famous locally or globally, you can ask them to make a video with a strength message.
• Send a drawing: it is possible to dedicate a drawing to patients using the official model. Just download it and, when it’s ready, post it on social media.
• Replicate the manifesto: Share and send the official World Lipodystrophy Day manifesto to highlight the requirements.

World Lipodystrophy Day for non-discrimination

The integration of lipodystrophy into public health systems is one of the main goals  to be promoted each year. To this end, consistency pays off, but substantial progress is lacking.

Therefore, and as long as patients do not benefit from all the guarantees, it is recommended to include them in society and to say no to distancing based on discrimination.

Any time of the year is okay if the intention is to empathize and do something that can change lives. In short, the struggle for each and everyone to have their place continues. Be part of the change!