World Scleroderma Day: what is your goal?

Scleroderma comprises a set of disabling rare diseases. Therefore, those affected fight in order to make it known through their world day.

Last update: June 28, 2021

World Scleroderma Day is commemorated on June 29. Thus, this is the name given to a group of rare diseases that affect the skin and connective tissues.

The objectives of the celebration are to raise awareness and make visible a disease that has no cure. In this sense, achieving these goals is of utmost importance to promote the creation of a support network that improves treatment and reduces the isolation of patients.

After taking a brief step through the purposes and relevance of World Scleroderma Day, it is convenient to delve into how the disease works, what are the available approaches and how to participate in this annual event.

What is scleroderma?

Scleroderma, as we mentioned at the beginning, is defined as a series of conditions related to the hardening and stretching of both the skin and the connective tissues.

Its incidence is higher in women, most often harming people between 30 and 50 years of age. Likewise, it is pertinent to mention that there are numerous types of scleroderma. They can range from skin damage to blood vessels, digestive tract, and other organs.

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Symptoms

Some symptoms or a wide variety tend to occur, depending on the type of scleroderma. However, the signs that recur regularly are the following:

  • Reaction to cold or Raynaud's disease.
  • Heartburn.
  • Constipation.
  • Swallowing problems
  • Lack of energy for no apparent reason.
  • Weight loss in a short time.
Raynaud's phenomenon is associated with autoimmune pathologies, so scleroderma is not alien to this symptom.

Causes

The causes of scleroderma are associated with a disproportionate accumulation and generation of collagen in the tissues. Although this condition that gives rise to the disease is known, there are still doubts about why it is generated.

The main evidence from the investigations points to genetic and environmental conditions and irregularities in the immune system. Following this order of ideas, 20% of patients have an autoimmune problem in common.

Available treatments

In principle, the diagnosis consists of blood tests, analysis of a piece of skin in the laboratory and tests of organ function. Once the complex path of detection has been overcome, the treatments are broken down into drugs, therapies and surgeries.

There is no definite cure, but medications serve the function of reducing symptoms in favor of the quality of life of the patient. The drug targets are as follows:

  • Delay severe changes in the skin.
  • Suppress the action of the immune system.
  • Reduce ailments.
  • Avoid infections.

Therapies are also part of the methods to improve symptoms. In these circumstances, physiotherapists guide treatment to the increased strength, increased range of motion, and pain regulation. In this way, the activities can be continued with a certain normality, without losing autonomy.

Surgery is the last option that specialists consider. The two most commonly used procedures are amputation and lung transplantation.

Therefore, amputation is triggered due to Raynaud's disease, specifically when the tissue of the fingers begins to necrotize. In the other case, the transplant proceeds because lung function is severely impaired.

Also read: Main skin diseases

World Scleroderma Day

Now that we know about the disease, we can focus on World Scleroderma Day more appropriately. The celebration is sponsored by the Federation of European Scleroderma Associations (FESCA).

Why was June 29 defined? The reason was the birth of Paul Klee that day, but in 1940. It was a Swiss painter with German nationality who combined a style of surrealism, expressionism and abstraction. Paul had scleroderma and many of his creations were found to be influenced by pathology.

Regarding the objectives of World Scleroderma Day are recognition of the courage of those living with the disease, the visibility of updated information, the increase of international support and the achievement of a cure.

How can I participate in World Scleroderma Day?

Everyone can participate. In addition, the commitment allows activities to be adapted to any routine. The best way to make a mark on World Scleroderma Day is with these initiatives:

  • Organize fundraising events, such as the campaign Snuggle Up! in Australia.
  • Download and share the official poster on social networks.
  • Make donations to FESCA.
  • Be part of a support group to transmit information in different sectors.
  • Promote the biannual World Congress on Systemic Sclerosis.
The manifestations in the hands of scleroderma are usually the most noticeable, although internal organs are also affected.

World Scleroderma Day to pursue the cure

Equal treatment for scleroderma patients is still far from being realized, since health systems in many countries of the world are not prepared for its treatment and timely diagnosis. However, organizations continue to make significant progress with the celebration to seek the cure.

Only the union of patients, doctors and the general population can facilitate improvements in the quality of life, while achieving the maximum goal. Likewise, early diagnosis should be sought with the help of a specialist rheumatologist, since in this way it is possible to save lives and reduce the worst consequences.