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:

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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 Icon

Physical health, including the symptoms you experience and the ability to perform daily living activities

Mental Health Icon

Mental health and emotional state, such as how hopeful, anxious, uncertain or even disconnected you feel

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Social aspects, that includes everything from interactions with family and friends to financial challenges or ability to communicate with others

Everyday health

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:

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Wash your hands, and try to avoid contact with people who are sick

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Maintain a healthy, well-balanced diet. Consider speaking with your doctor or a nutritionist for guidance

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Be sure to get plenty of rest. Try to get a full 8 hours of sleep every night

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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:

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Listen to your body and mind—write down your thoughts, feelings, symptoms

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Learn as much as you can about CAD and raise awareness of CAD in others

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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.

"This is not just about the cold. It is an all-year, all-seasons, 365-days-a-year condition."—Dr. Catherine B.,
Hematologist/Oncologist
"On the surface people may look well, but it’s important to understand what’s happening inside of them."—Dr. Anita H.,
Hematologist

Hear from others

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.

See transcript

Sharon: It doesnt snow here in Memphis, so when it does snow once a year, you go out and play in it, and so thats what I did, went out and played in it with my kids, and I would come in and Id 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 couldnt 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, Whats that?” <laughs> and he said, As a matter of fact, I dont 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 dont 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 lets 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 dont 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 husbands heart issues that I really played down the CAD. I felt very alone, and that it wasnt worth even discussing. 

Paul:  Thats a big thing about the illness is you dont necessarily see it, but they feel it.  Theyre experiencing all these things, but it just looks like theyre tired or dont want to do stuff.  Gaining research knowledge really helped me understand, Oh, moms not just not doing anything.  She genuinely doesnt 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> Youre 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 shes having a good day. When she has the energy to joke and play around and like do stuff, well do that, you know? Her presence is more.


Sharon: There are online support groups that Ive 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 tomorrows always a new day and it will be a better day, and it always is another better day,

So..thats how I roll. <laughs>

Paul: Shes always been a fighter. Shes always been strong and this is nothing that she cant overcome.

 

Sharon: Always have hope. You have to have hope. And thats 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.

See transcript

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.”

(Scenics/NATs/Music Up)

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.

(Music up/Scenics)

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

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.

See transcript

BRAD

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.

CORI

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.

BRAD

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.

CORI

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.

BRAD

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.

CORI

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.

BRAD

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.

CORI

I don’t feel that I’ve lost anything, it’s just doing it differently, and adapting differently.

BRAD

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

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.

See transcript

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.