World Lipodystrophy Day: Why Is It Celebrated?

Rare diseases are a common topic of discussion in the healthcare world. Today, we focus on lipodystrophy, which is a condition that affects 4.7 people per day. million. Given its rarity, treatment has been slow, which is why World Lipodystrophy Day is so important.

This day is celebrated on March 31st. The fundamental reasons for this day are entrepreneurship, awareness, exposure and the creation of strategic alliances that will help create progress in different areas of the world.

To give you a better understanding of what World Lipodystrophy Day is, we will talk about the goals of celebrating this day, what activities are involved, the importance of raising awareness, and how you can contribute.

What is lipodystrophy?

Lipodystrophy is a disease that affects adipose tissue. In other words, it causes the fat distribution in different parts of the body to be uneven.

What effects does this condition have on the body? First, you need to understand the importance of adipose tissue in the body. One of its essential functions is energy storage. In addition, it affects the metabolic balance. Those who suffer from lipodystrophy have reduced amounts of fat.

As a result, the body begins to look for other organs where it can store fat. This is what ectopic fat looks like. This fat is what accumulates outside the adipose tissue itself.

Thereafter, ectopic fat in people with lipodystrophy significantly affects the pancreas, liver, and some muscles.

From there, ectopic fat can cause some major deficiencies in the body. Some of these disorders include:

• Diabetes.
• Hepatitis.
• Subfertility (inability to conceive after 1 year of experiment).
• High levels of triglycerides in the blood.
• Increased risk of heart disease.

• Lactic acidosis.
• Formation of lipomas.

World Lipodystrophy Day

As we mentioned, World Lipodystrophy Day is March 31st. The first time this day was celebrated was in 2013. Since then, it has only kept growing.

This event is made possible every year thanks to the International Association of Relatives and People Affected by Lipodystrophies (AELIP). This organization also works with other organizations, e.g. European Organization of Rare Diseases (EURORDIS).

Today’s goals

The goals of this day are the keys to defining and measuring the continued growth of the celebration each year. These are some of the pre-determined goals:

• Raise awareness about lipodystrophy and the limitations of treatment.
• Raise awareness about the deterioration in the quality of life of those affected.
• Stop excluding people suffering from this disease.
• Report differentiation of lipodystrophy compared to other diseases.
• Get financial resources from various efforts so that patients can get the treatment they need.
• Encourage governments to devote resources to research.

Activities

Before each new event, they hold a meeting to coordinate any changes and to discuss the activities. Among the initiatives are:

• Improving the existing manifesto for World Lipodystrophy Day with ideas from patient associations.
• Campaign on social networks with a fixed hashtag: #WorldLipodystrophyDay. This hashtag changes only according to the year of the event.

• Use of the additional hashtag # United4Lypodystrophy. It can also be translated into any language.
• Charity events to raise funds. This activity returns when health conditions worldwide allow it.
• Information days.

Why is it important to talk about lipodystrophy?

It is important to talk about lipodystrophy because it puts relevant research and development on the public investment map. It helps people understand how the disease works. In addition, it provides greater opportunities for social adjustment to those affected.

It also ensures that patients with lipodystrophy have access to medications that will improve their quality of life. In conclusion, as not much is known about this disease, making it known globally means that a larger number of people will have access to up-to-date information.

How can I contribute to World Lipodystrophy Day?

Any effort you make will be well received by those who struggle with lipodystrophy every day. There are specific ways you can contribute to World Lipodystrophy Day all over the globe.

Here are some of them:

• Sharing a photo: Ideally, you upload a photo where you make an “L” with your fingers. This is the symbol of support for the people with this disease.
• Use hashtags: Post a supportive message on social media with the hashtags #WorldLipodystrophyDay and # United4Lipodystrophy.
• Get support from a celebrity: Having a friend who is known locally or globally is a great way to help get them to make a video with a message about it.
• Send a drawing: Another option is to make a drawing for a person who is ill, using the official template. Just download it and when you are done, share it on social media.

• Share the Manifesto: Share and submit the official manifesto for World Lipodystrophy Day to demonstrate today’s goals.

World Lipodystrophy Day does not discriminate

Integrating lipodystrophy into public health systems is one of the major goals we seek to promote each year. Although endurance is high, significant progress is lacking.

As long as total guarantees are not given to those who are ill, we therefore recommend including knowledge of this disorder in society and eliminating discrimination.

You can help as long as you show empathy and raise awareness that it can change people’s lives. Ultimately, we will continue to fight to ensure that no one is left behind.

Be a part of the change!