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:
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, which include everything from interactions with family and friends to financial challenges or the ability to communicate with others
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 haematologist 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
- Keep a journal with notes about your symptoms or any advice your doctor has given you
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-season, 365-day-a-year condition.”
Dr. Catherine B.
On the surface people may look well, but it’s important to understand what’s happening inside of them.”
Dr. Anita H.
Hearing from others
Brad’s Story: Living with Cold Agglutinin Disease
Brad, a rescue specialist with the Canadian Coast Guard, was diagnosed with CAD, changing his life in many ways.
Learn how Brad manages his symptoms and navigates life with a rare condition.
My name's Brad, I have primary CAD, Cold Agglutinin. I first started noticing symptoms of Cold Agglutinin—I didn't know it was Cold Agglutinin at the time—and I was a rescue specialist so we were out at sea and we went on a search and rescue call and we were pulling in the lines and my hands got so cold that it felt...it would have been more comfortable if somebody cut my fingers off. And after that trip, that call we did, I was just absolutely exhausted. I just had no energy, and I literally took the day off of work. So I went from 2011 to 2013 with just a barrage of tests. I have done 2 bone marrow, dozens and dozens of vials of blood, CT scans, MRIs; and in 2013, that's when I was diagnosed with primary CAD. I have had 2 strokes, minor strokes for me, which is very lucky. Being tired is one thing, being fatigued is taking tired 10 steps forward above that. Fatigue is something where you don't even want to get up out of bed, the fatigue is so much. If you were dragged behind a tractor and couldn't get up, that's the fatigue that we feel. That's how hard it is some days. This process goes on for years and years and years—this process will go on for the rest of my life, and that's where we need to educate people that this is not just a turn-on and turn-off situation. This will be with me for the rest of my life.
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?” and he said, “As a matter of fact, I don’t even 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 haemotologist.
I called my husband from outside and I said, “I think I have cancer. I don’t know,” and...
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 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 that, “Oh, mom’s not just not doing anything. She genuinely doesn’t have the energy due to certain haemoglobin 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, 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 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.
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 day care center, and the day care worker started getting agitated, and they said, “Somebody call the emergency.” I would look at him and say, “What’s the matter?” They said, “Don’t you know?” I said, “No.” 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. They told me, “You basically have 2 choices. You can either take steroids or move to a warm, dry place.” I went home and told my spouse at the time what he said, and she said, “Okay, 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. I found myself having difficulties being able to walk. Eventually, I got to the point where I felt that I, realistically, couldn’t work.
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, you want to provide for your family and suddenly now, you’ve got these restrictions.
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 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. If you do too much of that, then your fingers start to turn blue. 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 don’t know how to treat my blood. They want to treat it like everybody else’s and you can’t. That’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. 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.