Every May 15th, World Mucopolysaccharidosis (MPS) Day is celebrated, a rare disease that requires greater awareness from both healthcare professionals and society in general. The importance of improving access to treatments and increasing education about MPS is emphasized to address the challenges faced by patients and their caregivers.
The emotional and physical burden of caring for someone with MPS can be overwhelming, and many caregivers feel isolated in their experience. The lack of information and support can worsen the situation, making it crucial to establish support networks and resources for these families.
A study conducted in Mexico revealed that only 39% of caregivers have a deep understanding of the disease, making access to appropriate therapies difficult. Factors such as the need for regular infusions and travel time to receive treatment negatively affect the quality of life for patients and their families. Many patients must travel long distances weekly to access their treatment, adding stress and logistical difficulties.
Symptoms of MPS usually appear between the first and fourth year of the patient’s life, with common manifestations such as short stature, pigeon chest, spinal deviation, and slow growth. However, diagnosis is often delayed, which can lead to additional complications. Accessing treatments presents a significant challenge for those suffering from this disease.
The study results mention that most patients are in specific age groups, and the majority of caregivers reside in rural areas, complicating access to treatments and medical care. It is important to highlight that MPS not only affects patients but also has a profound impact on the lives of their caregivers and the family economy.
In summary, the fight against MPS is a fight for life, and it is essential to work together to improve the quality of life for patients, provide support to caregivers, and advocate for a healthcare system that is more responsive to the needs of those living with this rare disease.
