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Most people look forward to the coming of summer—warmer days, sunshine, and more time to be outside. Yet for some of us, summer is the most difficult time of year.

I live in an area where summer days often reach 100+ degrees for months, and I dread it. Intense heat is a trigger for myasthenia gravis (MG) patients like me and can make our symptoms worse. Summer is all about mitigating the effects of the heat and finding strategies to cope. 

Leaving the house is always a challenge for me, but during the summer it takes extra planning. I usually only leave the house for medical appointments. My husband and I have been doing this so long we feel like professionals at finding ways for me to conserve energy for traveling.

During summer, my husband usually moves our van close to the house so I don’t have to be outside for long, and we park as close to our destination as we can. I also have postural orthostatic tachycardia syndrome (POTS), which affects the body’s ability to self-regulate temperature. I have to wear waist-high compression stockings every day to maintain my blood pressure and heart rate, which can make me feel even more overheated. I usually use a cooling towel and a handheld fan when I have to leave the house in extreme heat. And I always have water with me and drink electrolytes all day every day. 

This is even more important during summer. It’s important to find ways to work around the heat and strategize and prepare beforehand. I try to schedule my medical appointments in the morning during the summer. I always have an ice pack ready that I can put on my neck when I can’t control my body temperature, and that provides immediate help. We have to use our air conditioner nonstop during the summer, and I also have a device that helps cool my bed as I sleep, which has improved my sleep during the summer. All of these things help me control my body temperature.  

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Intense sunlight can be difficult for patients with ocular symptoms (droopy eyes). Sunlight can also be dangerous when on some medications used to treat MG. The immunosuppressant I am on increases the chance of getting skin cancer and staying out of bright sunlight, using sunscreen, and wearing clothing that reduces sun exposure is especially important during the summer. I keep that in mind every time I go outside.

Overexertion is always dangerous for MG patients, but this is especially true during summer. This is why it’s so essential to plan ahead; exhaustion, worsening weakness, and even a myasthenic crisis can happen suddenly.

I have found it’s necessary to communicate with friends and family that summer is the most difficult time of year for me, and I am even more limited. It’s essential to manage your expectations of yourself because heat makes even simple tasks more difficult and even more dangerous. One of the most difficult parts of summer is being stuck inside all of the time, but this is all part of managing my disease.

Being aware that summer presents extra challenges for MG patients is important to avoid aggravating symptoms or crashing. I’ll be sitting in front of my fan, waiting until the days of sweater weather, warm blankets, and chilly mornings are back.