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As the weather changes, so does the life of a patient with cold agglutinin disease (CAD). This is because CAD is triggered by exposure to cold.

It was harder for me when I was first diagnosed because I was given little information on how to protect myself. In fact, I didn’t have a full understanding of what I was facing. Anyone with CAD will tell you that it is the lack of information given by the medical community that makes this disease hard to manage.

After having CAD for a couple of years, I have learned mainly through the CAD community and my own research what to look for and how to avoid situations that will cause hemolysis. Hemolysis is what causes CAD to go from basically okay to possibly life threatening. Doctors don’t speak our language; they speak in clinical terms that often make little sense because many of us didn’t go to school to learn medical terminology. When you are diagnosed with a rare disease, it behooves you to learn quickly or you’ll be lost.

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This is exactly what I did. I still have a lot to learn. In fact, I learn something new about myself and CAD every week. It’s hard not to. In recent years, there has been a hard push to better understand CAD, which is wonderful, but anyone with a rare disease can tell you it feels like a snail’s pace. However, there are more reports coming out that discuss how physicians around the world are identifying people with CAD and reporting on it. This is exactly what our community needs—the more we know, the more we can watch out for.

Read more about treatment for CAD

With that said, right now, I can only focus on the fact the weather is changing. We’ve had record heat the past couple of weeks, and it has been brutal. Hot enough that the air conditioning didn’t have any negative effect on me at all. Now that the heat dome has seemed to pass, it’s time to gear up for cooler weather. It’s predicted to be a bit above average where I live in New York in general, but nonetheless, it is still 20 degrees cooler today than it was 2 days ago, and I am starting to feel it.

It is so odd to me that coming out of a winter that’s 50 degrees feels amazingly warm, but in a summer where you’ve experienced an extreme heat like we have felt this year, 75 degrees somehow feels a bit cool. There must be an explanation, I just don’t know why it is.

So here I go, pulling out the winter gear and getting ready for fall. I know the key is to stay warm. I have a winter blanket hoodie that is so snuggly, which is my go-to garment. Anytime I feel cold, I put it on. I have a second one I leave in my car. It has been useful for my legs as they tend to get cold in the summer from the A/C and, because I need to drive with my window cracked, it helps keep me warmer in the winter. My couches are leather, which is cold in any season, so I keep mine on the back of the couch and lean on it. It’s a great way to keep warm. I picked up new wool hiker socks to keep my feet warm. When I’m in the house, I wear a type of sock boots.

I have gotten so used to wearing layers that I still do it in the warm months. I have these great leggings that are just the right thickness to keep me warm under my pants but aren’t too thick that I can feel them. I highly recommend getting a pair, especially because they have a lot of give so you can do all your everyday tasks without feeling constricted. Plus, they are awesome to wear when exercising.

I also wear short-sleeved shirts that feel like silk under my shirts. It’s just enough so that I don’t sweat and I stay comfortable. The last thing you want to do is wear so many layers that you sweat because the act of sweating alone will cool off your body and cause hemolysis. This was one of my biggest problems in the summer months and somehow this year, I’ve finally been able to figure out the right number of layers. As we know, though, things change from season to season, so constant adjustments need to be made.

As we wait for the science to catch up with us, be careful and protect yourself with both knowledge and warmth.