Tips for CAD Patients

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

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:

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
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.