With aHUS, I must pay attention to changes in weather

As the garage door opens, cold air pours in, creeping into my joints and bending my limbs. I step onto the driveway and am hit with a breeze that freezes me even more. Winter is here, and it will be like this for the next few months.

I’ve always loved the changing seasons: spring’s beautiful flowers, summer’s warm sun, autumn’s vibrant colors, and winter’s tranquil snow. But seasonal changes drastically affect my health because I’m living with a rare disease called atypical hemolytic uremic syndrome (aHUS).

aHUS causes the destruction of red blood cells, low platelet counts, and kidney failure. My diagnosis came four years ago, after I nearly died from multiorgan failure. At the time, I didn’t fully understand the long-term damage the disease causes, or how much my life would change because of it. Even external factors like a change in the weather affect my immune system, mobility, pain levels, and more.

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Last summer, we had sweltering temperatures that reached 100 F. I prefer the heat, because my health problems are less frequent than they are when it’s cold. But high temperatures and humidity raise my blood pressure and leave me exhausted. When it’s hot, the body needs more fluids to function properly, and extreme heat can additionally stress my kidneys.

I also have issues with my body’s ability to cool itself, because I no longer sweat. This might sound like a godsend, but because my body can’t naturally cool itself, I’m at a much higher risk of heat stroke. That said, my bones, joints, and muscles ache much less in warm weather.

As summer transitions to autumn, my health usually improves temporarily, but challenges return with the cold. The link between cold weather and immune response is well documented, and rainy days trigger my bone and joint pain, while cold spells leave me exhausted. Icy winds and snow make me reluctant to stay active, but I need to do it to maintain my overall health. I generally spend late autumn and winter sipping hot drinks under a heated blanket to help manage my symptoms. Also, when I’m too cold during the day, I shiver uncontrollably at night, which leads to intense joint pain, muscle cramps, and sleep issues.

To combat the effects of the cold, I try to do gentle indoor exercises and stay hydrated. With permanently low kidney function, stress on my kidneys is a constant threat, making it vital that I manage my chronic health issues during the winter.

When spring arrives, I feel revitalized. The thawing earth and blooming flowers energize my spirit. My bone, joint, and muscle pain lessens, making it easier for me to move around. I’m generally more active in spring and autumn and tend to schedule more doctor appointments during this time.

Learning and adaptation have been vital on my aHUS journey. While I may be at the mercy of the elements, understanding and responding to the challenges makes a world of difference.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.