Navigating Kidney Health with Spinal Muscular Atrophy

As a 34-year-old individual living with spinal muscular atrophy (SMA), my journey through the healthcare system has been extensive and enlightening. Regular interactions with various specialists such as pulmonologists, cardiologists, and neurologists are a staple of my healthcare routine. However, one crucial area often overlooked in the context of SMA is kidney health, overseen by a nephrologist.

Easy to overlook kidney problems

About ten years ago, routine blood work revealed elevated kidney levels, a sign that was easy to overlook amidst the myriad of SMA-related health concerns. As time progressed, I experienced an increasing frequency of urinary tract infections (UTIs) and bladder infections. This uptick in urinary issues was a red flag indicating that my kidneys needed more attention.

The link between my SMA and kidney health became evident in my late teens. At 18, a series of hospitalizations led to the discovery of my allergy to acetaminophen. This common medication wasn't being processed correctly by my body, leading to rapid onset of ketoacidosis, a serious condition affecting the body's acid-base balance. This revelation was pivotal, showcasing how SMA can intersect with other health issues in unexpected ways.

Vigilance is required for a kidney comorbidity

Despite thorough investigations, the underlying cause of my kidney problems remains a mystery. This uncertainty underscores the complexity of managing SMA and its associated conditions. What's clear, however, is the need for ongoing vigilance and regular monitoring of kidney function.

For those living with SMA, understanding the signs of potential kidney issues is crucial. Frequent UTIs, bladder infections, or persistent lower back pain could indicate underlying kidney problems. If you experience these symptoms, I strongly recommend undergoing kidney function tests. Early detection and management are key to preventing further complications.

A nephrologist can help prevent long-term complications

The importance of incorporating nephrology into the regular care routine for SMA patients cannot be overstated. This aspect of health may not be widely recognized within the SMA community, but it demands attention. Regular consultations with a nephrologist can provide vital insights into maintaining kidney health and preventing long-term complications.

A community-wide concern

Moreover, the journey to understanding and managing kidney health with SMA is not just a personal one; it's a community-wide concern. Sharing experiences and knowledge about this lesser-known aspect of SMA can help others in the community to be more aware and proactive about their kidney health.

I believe that my kidney issues stem from the amount of hours I hold my urine and the lack of hydration both consciously and subconsciously.

I have been working hard on drinking more water intentionally and not holding my pee.

In conclusion, as we navigate our lives with SMA, expanding our focus to include comprehensive health monitoring, including kidney health, is essential. Being proactive, staying informed, and engaging actively with healthcare providers about all aspects of our health, kidneys included, is crucial. By doing so, we not only manage SMA more effectively but also improve our overall quality of life. Let this be a call to action for the SMA community to embrace a holistic approach to health, ensuring that no aspect of our well-being is left unaddressed.