February 28, 2021 | World Rare Disease Day
The last day of February of each year marks the World Day of Rare or Infrequent Diseases to raise awareness and help people who live with any of these conditions.
International Rare Disease Day
Since 2008, the last day of February of each year, World Rare Disease Day is commemorated to raise awareness and help people who live with any of these conditions.
#RareisMany #RareisStrong #RareisProud #SomosMany #SomosFuertes #SomosProud
Why the last day of February?
This date was chosen precisely because the month of February is a peculiar month with respect to its number of days, it is "rare" and different from the other months of the calendar.
What are rare diseases?
Rare or infrequent diseases, also called minority diseases, are those pathologies or disorders that affect 1 person for every 2.000 inhabitants. There are also “ultra rare” diseases, those that affect 1 in 50.000 inhabitants. To date, between 5000 and 8000 different rare diseases have been identified. Although the cases are "few", adding the totality of these diseases they represent 7% of the world population. According to FEDER (Spanish Federation of Rare Diseases), it is estimated that in Spain there are more than 3 million people with rare diseases.
“Sometimes orphan diseases stop being orphans as scientists begin to study them more deeply. This has happened to idiopathic pulmonary hypertension in recent years.”
Report “Rare and orphan lung diseases” European Lung Foundation (ELF)
How long does it take to diagnose a rare disease?
The average time it takes to diagnose a rare disease is about 4 years, and can reach 10 or more years, in about 20% of cases. This delay in diagnosis implies that the patient does not receive any treatment or support for their disease, or that they receive inadequate treatment. This has a negative impact on their health condition and quality of life, also affecting the family environment, which is helpless, without medical answers to their situation.
“The consequences of diagnostic delay can be tragic, depriving patients of timely therapeutic interventions when they exist, with the consequent clinical worsening, physical, and sometimes intellectual and psychological sequelae, which could have been avoided or palliated with an early diagnosis. . In the case of genetic diseases, the absence of diagnosis implies ignorance of the risk of having more affected children and deprives the patient and the family of access to genetic counseling.”
Report "Strategy on Rare Diseases of the National Health System" of the Ministry of Health and Social Policy (2009)
rare respiratory diseases
Among these diseases, there are some of them that affect the respiratory system.
There are many rare lung diseases, so it is likely that millions of people suffer from them. This is a major problem, as many rare diseases are serious, long-lasting and often life-threatening.
Some of them are:
- Cystic fibrosis
- Pulmonary fibrosis
- Lymphangioleiomyomatosis
- sarcoidosis
- Pulmonary hypertension
- asbestosis
- Alpha-1 antitrypsin deficiency
All of them differ from each other according to the symptoms presented by the patient, the problem is that these, on many occasions, are very similar to each other, and even coincide with those of other pathologies as frequent as COPD and Asthma, which makes it difficult diagnosis and subsequent treatment. You can check the Comparative table of rare respiratory diseases in the Resources of the Lovexair website.
Lovexair projects aimed at rare respiratory diseases
ELF reports that scientists and clinicians are taking a greater interest in rare lung diseases in recent years, and have joined forces to share information about them. Over time, this information can help facilitate better diagnosis and treatment for this community.
At the Lovexair Foundation, committed to lung health, we develop and make available digital resources for patients, caregivers and health professionals.
The HappyAir ecosystem developed by Lovexair is a safe and digital environment that connects the patient with their health team, and provides an individualized care plan in charge of respiratory physiotherapists with specialized training, the HappyAir Coaches.
Thanks to this digital tool and the continuous support of physiotherapists, we can daily monitor the most important aspects of the lung health of affected people to learn how to manage it properly, prevent complications, improve their health and quality of life.
HappyAir Alpha-1
Within the HappyAir ecosystem, patients with Alpha-1 have the special #PionerosHappyAir program, through which they access a series of educational content with the aim of understanding the most important aspects of their disease.
Pioneers HappyAir Alpha-1 They also have the support of a HappyAir Coach, a health professional trained in respiratory health and digital health, who will help them manage their pathology properly and fully empower themselves in health.
For more information about these projects, we invite you to visit the website HappyAir or contact us by writing to Cuentanos@lovexair.com or by calling 91 822 78 74.
Authors:
- Eva Maroto López, Respiratory Physiotherapist of the Lovexair Foundation and Coach HappyAir
- Lila Martínez Ucha, Communication of the Lovexair Foundation
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