Profound fatigue has negative impacts on the day-to-day lives of patients with CAD1
In an interview-based study of patients with CAD who, on average, were diagnosed 6 years prior (N=16)*
of patients reported CAD-related fatigue as one of their most bothersome and/or most important symptoms to treat
Patients with CAD face a significantly increased risk of medically attended depression and anxiety2§
Data from a retrospective study subanalysis of patients with CAD (n=384) vs matched comparisons‖ (n=2789)
PATIENTS WITH CAD HAD
higher risk for medically attended anxiety or depression
aHR (95% CI): 1.6 (1.3-2.1)
higher risk for prescription medication or psychotherapy to treat anxiety or depression
aHR (95% CI): 1.8 (1.2-2.9)
Patients with CAD required extensive healthcare resources3
In a retrospective claims-database study of patients in Europe with CAD (n=85) vs matched comparisons¶(n=826)
Hear from Brad, a patient with CAD, as he discusses his path to diagnosis, the impact CAD has on his daily life, and the challenges he’s faced because of his disease.
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.
Hear from Sharon, a patient living with CAD whose road to diagnosis was unclear and confusing for her and her family.
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 hematologist.
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 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, 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.
Hear from Fred, a patient living with CAD, about the struggles he’s faced due to his diagnosis.
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.
aHR=adjusted hazard ratio; CAD=Cold Agglutinin Disease; CI=confidence interval; ICD=International Classification of Diseases; OR=odds ratio.
*Previous CAD treatment was not systematically collected for all subjects and is a limitation of the study.
†Reactions to cold environments included cold or numb feet, hands or other body parts; skin discoloration; muscle aches or headaches; and fatigue.
‡Sleep disturbances included problems falling asleep or staying asleep.
§Medically attended anxiety or depression was defined using International Classification of Diseases (ICD-9 and ICD-10) codes for inpatient states and outpatient hospital visits, medication class, and procedure codes for psychotherapy.
||Patients with CAD were matched (1:10) to non-CAD patients by age (±3 years), sex, race, region of residence, and active time and season and year of entry date in the Optum health plan. In this sensitivity analysis, patients with cold agglutinin syndrome secondary to coexisting malignancy or infection were excluded. Cox proportional hazard models adjusted for age, sex, race, region, comorbidity score and cluster.
¶Patients with CAD were matched without replacement 10:1 with comparison patients from the general population based on age (±3 years), sex and Charlson Comorbidity categories.
**After index date.
References: 1. Su J, Kosa K, DiBenedetti D. Patient-reported disease burden: In-depth interviews of patients with CAD. Blood. 2020;136(suppl 1):29-30. dol:10.1182/blood-2020-136788 2. Patel P, Jiang X, Nicholson G, et al. Medically attended anxiety or depression is increased among newly diagnosed patients with cold agglutinin disease (CAD). Blood. 2020;136(suppl 1):28. doi:10.1182/blood-2020-139791 3. Vágó EK, Nicholson G, Horváth-Puhó E, Hooda N, Fryzek JP, Su J. Healthcare resource utilization among patients with cold agglutinin disease in Denmark. Curr Med Res Opin. 2021;37(10):1829-1835. doi:10.1080/03007995.2021.1960494