LIVING WITH A CHRONIC CONDITION
Tips for general wellbeing
Everyone’s experience of a chronic condition will be different. Your personal experiences can impact your quality of life and your ability to “live well.” What “living well” looks like for you may not be the same as for someone else. To assess if you’re living well, some things to think about are:
Everyone’s experience of a chronic condition will be different. Your personal experiences can impact your quality of life and your ability to “live well.” What “living well” looks like for you may not be the same as for someone else. To assess if you’re living well, think about your:
Physical health, including the symptoms you experience and the ability to perform daily living activities
Mental health and emotional state, such as how hopeful, anxious, uncertain or even disconnected you feel
Social aspects, that includes everything from interactions with family and friends to financial challenges or ability to communicate with others
The impact on your life
CAD may affect your ability to live well in many different ways. Take our Lifestyle Quiz to get a better understanding of how your own experience with CAD may be impacting your everyday life.
Because a compromised immune system and infections can trigger CAD symptoms, it’s important to stay as healthy as you can. Here are a few ideas:
Wash your hands, and try to avoid contact with people who are sick
Maintain a healthy, well-balanced diet. Consider speaking with your doctor or a nutritionist for guidance
Be sure to get plenty of rest. Try to get a full 8 hours of sleep every night
Ask your doctor if exercise is appropriate for you
Living with CAD
Everyone has their own unique ways of coping and trying to improve their quality of life. Here are some things you can try to help manage life with CAD:
Listen to your body and mind—write down your thoughts, feelings, symptoms
Learn as much as you can about CAD and raise awareness of CAD in others
Understand your coping process—check in with yourself to make sure you are not avoiding doing the things you love (where possible) and that you are talking about what it’s like for you to live with CAD.
As a reminder, always check in with your healthcare team to let them know your symptoms and how you are feeling.
Tips for your routine
You may not know anyone else with cold agglutinin disease (CAD), but there are approximately 10,000 people in the United States and Europe who are living with CAD. Together, we can find ways to help make everyday life feel a little more manageable.
Always remember to talk to your doctor before making any changes to your diet or routine. Here are some suggestions to help maintain your overall health, prepare you for appointments, and manage your CAD.
Cold temperatures typically trigger symptoms
- Consider dressing in layers and be cautious around air conditioning—exposure to cold may make your symptoms worse
- Keep an extra scarf, sweater, hat, and pair of gloves in your car
- Consider wearing gloves and avoid direct contact when handling ice-cold beverages or reaching for items in the freezer
Staying on top of your care
Keeping track of how you’re feeling and staying in touch with your doctor are important parts of managing CAD. For starters, make sure you have a healthcare provider like a hematologist who understands CAD.
Remind medical staff that:
- IV fluids and blood transfusions need to be warm
- Your blood needs to be kept warm after you have it drawn for blood tests
- Take your doctor discussion guide to appointments so you’re ready with questions
- Download this helpful blood lab card with tips for doctors and medical staff on handling blood tests and draws
- Keep a journal with notes about your symptoms or any advice your doctor has given you
- Use our blood test tracker to stay on top of your blood test results
Insights from healthcare professionals
Discover insights from healthcare professionals with experience in the research and care of CAD. Remember, your doctor knows you best and should be your first source of information when it comes to your care.
Hear from others
Patrice’s Story: Living with Cold Agglutinin Disease
Patrice learned about CAD after her nose turned purple—but the condition and associated anemia caused by hemolysis can have much more severe consequences. Hear about the impact CAD had on Patrice's life and how she learned to advocate for herself.
In 2006, my husband and I went to the Galapagos and Machu Picchu.
In the Galapagos, everything was great.
On our way to Machu Picchu. My sister in law said, "Are you okay?"
And I said, "Well, yeah, I think so."
She said, "Well, your nose is bright purple."
And I was like, "What? You've got to be kidding." And so they took a picture and I noticed that my ears were cold and they were purple, too.
We got back home.
My first trip to the grocery store, the reaction happened again with the nose and the ears and the fingers.
I happened to be talking to my sister, who's a veterinarian.
She said, "That sounds like it might be something Cold Agglutinin Disease," which apparently affects dogs as well.
So I decided, "Okay, I'm going to go to the doctor."
I showed her the picture and told her that I had read about it. I Googled it, and it did sound like CAD.
She ended up referring me to an oncologist hematologist, and he did a series of tests over about a six week period of time and came to the conclusion that I did have primary Cold Agglutinin Disease.
The hematologist told me that the best thing I could do was to stay warm and that I might want to consider moving to a warmer climate if we couldn't keep the anemia that results from CAD under control.
Prior to my diagnosis, I was always an avid hiker. Once we moved up here to Asheville, where there's so many opportunities right at your fingertips, I joined a hiking group.
One thing that I discovered pretty quickly was that as the temperatures warmed, everybody wanted to go to high altitude, where it was cooler.
When everybody else was comfortable, I was getting too cold. It got to be too much. I ended up dropping out of that group. What I've discovered is that when I'm experiencing hemolysis, I get these periods of extreme tiredness, fatigue.
In my case, it's clearly associated with having extended periods of time where the CAD has kicked in.
It catches up with me after a while. My husband and I love to travel, but I have to really do a lot of research and be careful.
In 2017, we took a trip to Africa. I did everything I could to prevent the CAD reactions. That would happen early in the morning and at night when the temperatures would really drop.
Despite all my efforts to prevent the hemolysis that comes with CAD. When I got back to the United States, I had an appointment with my hematologist. He noted that I had the worst anemia that I had ever had and an enlarged spleen.
After the trip to Africa I really did realize that CAD was more serious than I actually thought it was and that it could lead to some really severe medical consequences for me.
In addition to that, it's it's really impacted my social life, my freedom of movement.
I'm pretty much confined to the house nine months of the year. The thing that's been most difficult for me with CAD is finding my own voice, a way to advocate for myself.
Asking someone to accommodate me. I feel that that automatically means I'm inconveniencing them.
My biggest support has come from my husband, David.
He is proactive. He thinks in advance about what my needs are.
One of the people who is really interested is my primary care doctor. Every visit she gets around to talking about you know, how am I doing with my CAD? And I find that I've swallowed my feelings for so long that as soon as she asks me, it's like the tears start coming because she really cares.
Her automatic reaction is, perhaps I'm getting overwhelmed or depressed, and it's not that at all. It's just that I have so few opportunities to talk about it that I tend to tear up and get emotional.
My advice for someone starting out with CAD is to become comfortable advocating for yourself and try to be equally comfortable letting other people advocate for you and help you in any way they can.
Betty’s Story: Living with Cold Agglutinin Disease
CAD is a rare disease, and the shock of being diagnosed can be isolating. Hear about how starting an online patient support group helped Betty feel more empowered and connected.
I was born in Mount Vernon, New York, and raised there. I married at 19. I was six months pregnant when I graduated from New York University School of Commerce.
I'm an artist. My medium of choice now is collage work. This year I was in 15 shows.
I live with the very special man, Harold, who I've been with almost 17 years.
Winston, my dog, is a rare breed, just like Cold Agglutinin is a rare disease. So we're kind of rare around here.
When I grew up and I never could really tolerate the cold. And in my thirties, I found out that I was anemic.
The doctor gave me some iron, which did nothing for me. I needed the sun.
So at some point along the way, I decided that I wanted to live in a warm climate. Miami was still a small town when I came to Florida. It was 1975.
My parents were here and they were definitely a very good support system.
My hemoglobin when I came here remained low-normal, which I was surprised. I never thought much about it though, because I was a young person.
I was very busy trying to make a life for myself.
I went to work for a major retail store and the store was always cold, but I used to dress warmer and keep myself comfortable.
I was always feeling tired. I would wake up in the morning thinking about what time I'm gonna go to bed. That kind of tired.
It never occurred to me that I was different until I got my diagnosis.
My internist referred me to a hematologist who then did a large battery of tests. I was 62 when I was diagnosed with Cold Agglutinin disease.
You need to be vigilant and taking care of yourself.
I can tell when my hemoglobin is trending downward. When the muscles in my legs feel very, very weak and I can't take another step.
Fatigue's a huge factor in Cold Agglutinin disease.
I could easily sleep a whole night and in 3 hours I'll find myself ready to take a nap.
I have to keep myself warm at all times. A jacket or sweater. Sometimes I have to wear gloves, even in Florida.
I can't have anything with ice. I can't have any ice down on if I have a swelling or a bruise or something, and I cannot really have anything cold to drink.
I also make sure I wear this medical alert bracelet because this describes that I can never be given anything cold in the way of infusion or transfusion.
Otherwise, it will trigger the Cold Agglutinin antibodies and cause further hemolysis.
In the year 2000, when I was diagnosed with CAD, I knew no one would have this disease nor had ever heard about it.
It was so distressed of learning that I had something rare and scared to death.
To calm myself down. I started doing research, but I was really on my own. It was really a dearth of information about Cold Agglutinin disease at that time.
I became aware of two other patients and we communicated for several years.
We felt totally isolated from the beginning.
Each one of us described this isolation. It was terrible.
Once I realized that there was such a need for information, support, and comfort to other patients. I knew my calling.
And I suggested that we needed to establish a patient website to communicate with each other and to share information and try to help each other, which is how I began coldagglutinindisease.org.
It was amazing that people found us so quickly and we grew, from what I called it, our CADy family of three to 100. 200 within the year or two.
The CADdy Chatter Facebook group formed in 2009. Ultimately, it grew to a group of about 1300 today. Of patients from all over the world.
The newbies come in and ask, "I'm new to this and I don't know what to do and I'm scared to death."
And then we all say, "You've come to the right place. We're going to help you. You're going to be fine."
Patients are appreciative. The care partners are appreciative. And I'm very appreciative because it helped me as well.
I've become much more empowered and comfortable, and here I am living with this already 22 years.
I don't think about it all the time, but it is with me all the time, of course.
I'm no longer that frightened, isolated, fearful person.
I'm still active in the online CAD community. For me, that's been very rewarding.
What could be better than to help other people.
Sharon’s Story: Living with Cold Agglutinin Disease
Because CAD symptoms can be hard for others to see, Sharon’s condition took a back seat to other issues in her life. Hear about her family’s support and the important role it plays in helping her manage her condition.
Sharon: It doesn’t snow here in Memphis, so when it does snow once a year, you go out and play in it, and so that’s what I did, went out and played in it with my kids, and I would come in and I’d shake my hands because they hurt really bad and I looked at them and they were blue, and then my feet were just numb. I couldn’t feel my feet…
My legs would hurt so much and it was mainly when I was cold.
I started seeking out different types of doctors…
Nobody could help me…until the day that I visited my rheumatologist -- they called me and they said, “You need to come in. We need to talk to you.”
“You have cold agglutinin disease,” and I said, “What’s that?” <laughs> and he said, “As a matter of fact, I don’t even <laughs> know what it is. I had to look it up.”
It was really scary because …they were rushing me off and telling me… “You have to go to the cancer clinic, and now you have to see an oncologist, and you have to see a hematologist.
I called my husband from outside and I said, “I think I have cancer. I don’t know,” and... <chokes up>
I went to the oncologist and they did a lot of tests.
At the end I was told that I did have CAD and I did not have cancer, and so let’s go from there.
Life changed dramatically from the CAD diagnosis .
I was in the bed a lot, just exhausted.
My husband had to take over everything, and it was another difficult time in our life because he had open heart surgery.
So my son Paul, and Joshua, had to step in, and they <laughs> mainly took care of me and my husband.
Paul: It was very stressful. It forced me to assume a role I don’t know if I was necessarily ready to assume, however, for the greater good of the family I decided that was what needed to be done.
Sharon: We were so consumed with my husband’s heart issues that I really played down the CAD. I felt very alone, and that it wasn’t worth even discussing.
Paul: That’s a big thing about the illness is you don’t necessarily see it, but they feel it. They’re experiencing all these things, but it just looks like they’re tired or don’t want to do stuff. Gaining research knowledge really helped me understand, “Oh, mom’s not just not doing anything. She genuinely doesn’t have the energy due to certain hemoglobin levels.” You know, like I had an explanation for things and it made it a lot more clear.
Sharon: When I started learning more about CAD, I thought, “Oh, well, this is manageable.
Acceptance is the main thing. That you can no longer do certain things. I have to reevaluate my life and do it this way now.
The best days are the best days, <laughs> You’re feeling good, and you want to do everything.
You really learn to appreciate your life and you really learn to appreciate your good days.
Paul: Her getting out of the house is pretty indicative of she’s having a good day. When she has the energy to joke and play around and like do stuff, we’ll do that, you know? Her presence is more.
Sharon: There are online support groups that I’ve found on social media and I found that that gave me so much information, just from what they went through and their opinions or what to ask doctors.
My mother had kidney cancer for seven years. She was a very strong woman.
She taught us <chokes up> that you have no choice but to be strong.
You may have just had a really rotten day with this disease, but tomorrow’s always a new day and it will be a better day, and it always is another better day,
So..that’s how I roll. <laughs>
Paul: She’s always been a fighter. She’s always been strong and this is nothing that she can’t overcome.
Sharon: Always have hope. You have to have hope. And that’s what gets you through it.
Fred’s Story: Living with Cold Agglutinin Disease
Despite moving to a warmer climate, Fred has continued to regularly battle symptoms related to his condition. Hear about his journey through life since his CAD diagnosis, and how his strong self-advocacy has helped along the way.
I was living in Ohio, and it was wintertime. One day I took my son to daycare center, and the daycare worker started getting agitated, and they said, "Somebody call the emergency," and I would look at them and say, "What's the matter?" And they said, "Don't you know?" And I said, "No!" And they said, "You're all blue!"
I went that same day to my family doctor and he didn't know what it was. He sent me to a specialist at the …University of Cincinnati, who did more tests and they came back with a diagnosis of Cold Agglutinin Disease. Before that moment, I had never heard the term, or knew what it was or knew anything about it.
…and they told me, "Well, you basically have two choices. You can either take steroids or move to a warm, dry place."
So I went home and told my spouse at the time what he said, and she said, "Okay, well, I guess we have to move.”
When I moved to Arizona, I continued to work. And I found from experience, though, that no matter where I went, there was times when the environment would be cold, and it would trigger my condition. My feet would get very sore and very numb and I wore wool socks but that wasn’t enough. And I found myself having difficulties being able to walk So eventually, I got to the point where I felt that I realistically couldn't work! And at that point I went on disability.
I was a very active person before I got CAD. I was just living a normal life. I had two kids. We lived in a home, lawns to mow, a job to go to. We went on vacations…things that everyone pretty much does and you don't think about it.
It was frustrating when now I had these new limits….
especially when you want to provide for your family, and suddenly now you’ve got these restrictions. And then the other problem with CAD is you didn’t always know when you would be triggered.
If I started to wash my hands when the water was really cold or if I'm cooking, which I love to do, -- I have to be careful there, because when you're cooking, you tend to wash your hands and put your hands in the refrigerator or the freezer to get things. So if you do too much of that, then your fingers start to turn blue. So it does change your life in just about every way.
One of the doctors early on said that you have to be your own advocate because the people around you know so little about it.
The laboratories oftentimes they don’t know how to treat my blood; they want to treat it like everybody else’s and you can’t. It’s a learning experience that I typically have to initiate and help them understand… and it doesn’t end.
I’m not a person that talks about my emotions very much. I internalize them and I just try to deal with it in a way that I’m not taking it out on other people.
Even though this condition is rare, and even though it has limits, I have for the most part been able to live a pretty normal life.
Instead of giving up things totally you just learn to do things differently-- in a different way.
One of the things that I’m proud of is I got involved with being an advocate for members of homeowners’ associations and that’s been very important because it’s kept me busy and it’s given me some goals and it’s given me an opportunity to help people.
I enjoy walking with the dogs. I love architecture. I still draw. I used to do that for a living but now I do it more for pleasure. It gives me a chance to use my imagination.
Having this disease actually is not all bad because it’s taught me to appreciate life.
It’s made me realize that there’s other people that have different problems than I have and it’s helped me to be more empathetic towards them. I think that’s made me a better person.
Brad’s Story: Living with Cold Agglutinin Disease
Brad, a rescue specialist with the Canadian Coast Guard, was diagnosed with cold agglutinin disease, changing his life in many ways. Learn how Brad manages his symptoms and navigates life with a rare condition.
When they said it was primary CAD, cold agglutinin, my first reaction is okay “What is it?” And second reaction is, “Well let’s fix it.” And unfortunately the doctors all say exactly the same thing: “There’s nothing we can do for you. There’s no cure for it.” That’s when they say, “Don’t get cold because your blood will clump; causes these problems.”
I worked for the Canadian Coast Guard, and I was a rescue specialist, and went on a search-and-rescue call. And we were pulling in the lines and my hands got so cold. It would’ve been more comfortable if somebody had cut my fingers off.
I went and seen my doctor and he did a battery of blood tests at that time, and that’s when they came back and said I have this protein, cold agglutinin. And the first thing they told me is it’s cancer.
He received so much information that he couldn’t really retain the name. I hit him with a barrage of questions that he couldn’t answer. And I quickly realized that now I’m going to be his advocate.
And in 2013 that’s when I was diagnosed with primary CAD.
I’ve had two strokes, minor strokes, for me which is very lucky. Lots of fatigue. If you were dragged behind a tractor and couldn’t get up that’s the fatigue that we feel.
Most of the medical community don’t understand it. My doctor told me that he’d seen one other person with cold agglutinin. I’ve been to the emergency room where I had an emergency room doctor tell me, “You don’t know what you’re talking about.” I’ve showed them the medical alert bracelet and they still go, “I don’t know what it is, I’ll have to look it up.”
And it’s very cavalier the way they say, “Don’t get cold.” But when you have this disease, it’s not so easy to deal with. Because cold can happen at any point in time.
Brad loved to do this competition, it’s an obstacle course. And at the end of 2015, there were so many water challenges, and I could see that he was having problems breathing. I could see that his hands were going white. And that night was the night I knew cold agglutinin had changed our lives.
When it came to time to retire, emotionally it was very hard to admit that I can’t do this anymore. I have to leave what I love to do. There were some teary nights, and some teary days. Because it was my passion.
I was on a fish boat that capsized years ago. I was in a life raft for three days, and to me, that was easier than this journey has been. Because I was in the life raft and I knew somebody’s going to find us. This is a journey that’s uncertain and it’s always uncertain.
It was pretty lonely in the beginning; we went camping a lot and suddenly we couldn’t do that anymore, and we do a lot of things indoors now, and we’ve got shops that allow us to get our creative outlets going.
We still go for walks and still go to the beach and stuff like that—I just can’t go swimming, and that’s okay. I do a lot of volunteer stuff now which is good for my heart, you know, and it makes me feel good.
I don’t feel that I’ve lost anything, it’s just doing it differently, and adapting differently.
I just refuse to be locked into—in my house, to let this rule my life 100%. It does change your life. But don’t give up. Keep moving forward. Because there’s always tomorrow and you can always still enjoy your family and enjoy the things that you still do. It’s just on a different basis.
Jodie’s Story: Living with Cold Agglutinin Disease
Cold agglutinin disease may be rare, but there are others out there who are finding ways to manage life with the disease. Jodie, a mother of two, learned that she had CAD while she was serving in the military. Learn about Jodie’s diagnosis, how CAD affected her career, and how she manages everyday life with her family.
My name is Jodie, and I have primary cold agglutinin disease. I am a mother of two teenage boys and two fur babies. I am an E-6 in the U.S. Navy.
I was deployed to Djibouti, Africa. I acquired a cold while I was there, just following deployment. I started to notice symptoms where I was tired, significantly more fatigued during activities than I'm accustomed to.
We discovered upon some blood testing that things didn't look right. It looked like my red blood cells were sticking together. I did three different blood tests over a period of two weeks, anywhere from seven to nine tubes of blood each time. Each time, I had two 30-year general practitioners on the military base state, “We've never seen results like yours before.” I should have gotten in trouble because I looked at the doctor and said, “If you stick me one more time, I'm taking your blood! Please send me to somebody who knows what to do.” And they did.
I saw a specialist, which ultimately led to, “We think you have hemolytic anemia.” I went back to my specialist, and they said, “Oh gosh, guess what you have? You have cold agglutinin disease.” Almost five years to be diagnosed!
One thing about having cold agglutinin disease that I don't think friends, coworkers, and families genuinely understand is the impact, and the extent that impact can have on daily living.
I can't just go to the beach and go on the water anymore. I can't move anywhere that I would like to go. I can't just go to restaurants. Everywhere you go, there's air-conditioning, so it's not just the environment outside. You have to worry about internal environments year round.
Prior to being diagnosed with cold agglutinin disease, as an active duty military member, I have to stay physically fit. And I've gone from being very active on a regular basis to some days I can barely walk to my own car without losing my breath.
My hematologist at this point prefers I try to keep my exercise to none, if I can, or minimal at best. And I struggle with that because that's an outlet for me.
When I finally received a diagnosis, it was empowering. And then I felt scared, and I felt angry. I felt like I had been kicking and screaming and crying to everybody that would listen, “Hey, something's not right, something's off with my body.”
Once you get used to this disease, when your hemoglobin drops even a point, you know the difference. You can feel the difference in daily activities. Your heart will race. Your blood pressure skyrockets. Your resting heart rate goes through the roof. It’s a very scary feeling.
It's such an under-researched disease. It's such a misunderstood disease that there's not as much knowledge out there as I thought there would be.
If there were a treatment available specifically designed for people with cold agglutinin disease—just the idea makes me smile from my heart. It would be a tremendous impact. It's rare. There's not a ton of people. But for those people, you've just made life so much better.