How One Woman with Cold Agglutinin Disease Advocated for Herself

Sponsored by Recordati Rare Diseases.

My name is Nancy, and I was diagnosed with Cold Agglutinin Disease (CAD) over a decade ago. And for the first six years after diagnosis, much of my time was spent battling fatigue while I searched for any kind of treatment.

At the time, there were no FDA‑approved treatment options for Cold Agglutinin Disease. I remember the moment clearly—and that my situation might be as good as it would get. I kept thinking, “The road just stops here? This is it? This can’t be it.”

This content is sponsored by Recordati Rare Diseases Inc. (RRD) and is intended for US audiences only. 

Patient stories reflect the real-life experiences of persons diagnosed with CAD who have been prescribed ENJAYMO® (sutimlimab-jome). However, individual experiences may vary. Patient stories are not necessarily representative of what another person using ENJAYMO® may experience.

The information provided here is general in nature and is not intended to be a substitute for professional medical advice, diagnosis, or treatment. You are strongly encouraged to seek the advice of your doctor or another qualified healthcare provider with any questions regarding a medical condition.

Individual results will vary. Please see ENJAYMO’s full Prescribing Information, Medication Guide, and Important Safety Information below.

Living With the Impact of CAD

At the time, my symptoms were ruling my life. The fatigue and sensitivity to cold were overwhelming. Before my diagnosis, I lived a full and active life. Energy was never hard for me to find, and slowing down was usually my least favorite activity. Over time, however, my symptoms of CAD began to take a toll. The fatigue I experienced was overwhelming and persistent, not the kind of thing a quick nap could fix. Combined with extreme sensitivity to cold, it impacted my independence and ability to maintain my usual routine.

Living With More Than Symptoms

Dealing with physical fatigue is already difficult, but its emotional toll doesn’t always get discussed. When you can’t do the things you need and love to do, it changes how you feel about yourself, and I had never before had a problem believing in myself or what I can do for others.

Many people don’t understand how emotionally diminishing CAD fatigue symptoms can make someone feel, or how frustrating they can be. It’s often difficult to see that anything is wrong with a CAD patient, and it’s sometimes mistaken for tiredness, laziness, or simply getting older. Moments like that can change how we feel about ourselves and the confidence others have in us.

Taking the Next Step

My hematologist and I tried several treatment options including blood transfusions, but my symptoms persisted.

Despite my symptoms, I knew I’d have to put in the work to find other options, so I traveled to a teaching hospital for a second opinion with a specialist who’d studied CAD closely. That consultation was a turning point in my search for treatment when he told me about ENJAYMO.

Finding Another Option

I returned to my hematologist with information about ENJAYMO® (sutimlimab-jome), a prescription medicine used to treat the breakdown of red blood cells in adults with CAD. The clinical data showed notable results, especially in strengthening hemoglobin levels in some patients. We decided to move forward with treatment.

My doctor reviewed my vaccination history to ensure I had all required vaccinations before starting ENJAYMO and discussed the importance of monitoring for early signs and symptoms of potential serious infections. My doctor also discussed the potential for infusion-related reactions, and a potential increased risk of autoimmune disease. Please see Important Safety Information below, and full Prescribing Information, and Medication Guide.

Learning that there was a FDA-approved treatment specifically for CAD patients gave me hope I hadn’t felt in a while. I was so excited to have found a potential option, and that felt like progress – like there was a potential new path.

The Power of Advocacy

We did have some challenges finding an infusion site capable of administering ENJAYMO. At first, it looked like my journey to treatment was also going to involve traveling 100 miles because of a medical coding issue.

I enlisted some excellent support from both the Recordati Rare Diseases Patient Support team and the hospital staff, and thanks to their communication and teamwork, I was able to receive ENJAYMO closer to home. I was approved on a Friday and had my first infusion the following Tuesday.

I’m happy to say ENJAYMO has been working for me. Since starting ENJAYMO, my hemoglobin has risen by almost four g/dL, and I haven’t needed transfusions or additional pharmacological intervention for my CAD. My fatigue due to hemolysis has improved since starting ENJAYMO. Fatigue from CAD no longer limits my activities, and I am able to spend quality time with the people who matter most to me – my husband, kids, grandkids, and friends. Remember, this is my experience – not everyone’s will be the same.

A Message to Others

One of the most important things I learned is that it’s okay to ask questions. The two most important questions others need to ask in order to be good advocates are “Why?” and “Why not?” The answers to those two questions can serve as a guide in understanding your options and participating confidently in your care.

It takes courage to advocate for yourself, and it’s easier to remain courageous when you’re alongside someone close to you, so tap into your support systems.

I hope that you’ll remember my story if you ever encounter your own roadblock, and that it encourages you to keep advocating for yourself.

Learn more about Cold Agglutinin Disease and how ENJAYMO may help you.

INDICATION AND IMPORTANT SAFETY INFORMATION

What is ENJAYMO? 

ENJAYMO® is a prescription medicine used to treat the breakdown of red blood cells (hemolysis) in adults with cold agglutinin disease (CAD).

It is not known if ENJAYMO is safe and effective in children.

Do not receive ENJAYMO if you are allergic to sutimlimab-jome or any of the ingredients in ENJAYMO.

ENJAYMO can cause serious side effects, including: 

• Serious Infections: ENJAYMO is a prescription medicine that affects your immune system. ENJAYMO may lower the ability of your immune system to fight infections. ENJAYMO increases your chance of getting serious infections including those caused by encapsulated bacteria, including Neisseria meningitidis, Streptococcus pneumoniae, and Haemophilus influenzae type B. These serious infections may quickly become life-threatening or cause death if not recognized and treated early.
• You must complete or be up to date with the vaccines against Streptococcus pneumoniae and Neisseria meningitidis at least 2 weeks before your first dose of ENJAYMO.
• If your healthcare provider decides that urgent treatment with ENJAYMO is needed, you should receive vaccinations as soon as possible.
• If you have been vaccinated against these bacteria in the past, you might need additional vaccines before starting ENJAYMO. Your healthcare provider will decide if you need additional vaccines.
• Vaccines do not prevent all infections caused by encapsulated bacteria. Call your healthcare provider or get emergency medical care right away if you get any of these signs and symptoms of a serious infection: fever with or without shivers or chills, fever with chest pain and cough, fever with high heart rate, headache and fever, confusion, clammy skin, fever and a rash, fever with breathlessness or fast breathing, headache with nausea or vomiting, headache with stiff neck or stiff back, body aches with flu-like symptoms, and/or eyes sensitive to light.
• Infusion-related reactions: Treatment with ENJAYMO may cause infusion-related reactions, including allergic reactions that may be serious or life-threatening. Your healthcare provider may slow down or stop your ENJAYMO infusion if you have an infusion-related reaction and will treat your symptoms if needed. Tell your healthcare provider right away if you develop symptoms during your ENJAYMO infusion that may mean you are having an infusion-related reaction, including: shortness of breath, decrease in blood pressure, chest discomfort, rapid heartbeat, nausea, injection site reaction, flushing, headache, dizziness, rash, and itchy skin.
• Risk of autoimmune disease: ENJAYMO may increase your risk for developing an autoimmune disease such as systemic lupus erythematosus (SLE). Tell your healthcare provider and get medical help if you develop any symptoms of SLE, including: joint pain or swelling, rash on the cheeks and nose, and unexplained fever.
• If you have CAD and you stop receiving ENJAYMO, your healthcare provider should monitor you closely for return of your symptoms after you stop ENJAYMO. Stopping ENJAYMO may cause the breakdown of your red blood cells due to CAD to return. Symptoms or problems that can happen due to red blood cell breakdown include: tiredness, shortness of breath, rapid heart rate, and blood in your urine or dark urine.

The most common side effects of ENJAYMO include: increase in blood pressure, urinary tract infection, respiratory tract infection, bacterial infection, swelling in lower legs or hands, joint pain, headache, nausea, runny nose, bluish color to the lips and skin, dizziness, feeling tired or weak, cough, and changes in color or sensation in the fingers and toes (Raynaud’s phenomenon).

These are not all the possible side effects of ENJAYMO. Call your doctor for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Call 1-800-FDA-1088 or visit www.fda.gov/medwatch.

Before receiving ENJAYMO, tell your healthcare provider about all of your medical conditions, including if you: have a fever or infection, including a history of human immunodeficiency virus (HIV), hepatitis B, or hepatitis C; have an autoimmune disease such as systemic lupus erythematosus, also known as lupus; are pregnant or plan to become pregnant. It is not known if ENJAYMO will harm your unborn baby; are breastfeeding or plan to breastfeed. It is not known if ENJAYMO passes into your breast milk.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements.

Please see Full Prescribing Information, including Medication Guide. 

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PP-ENJ-US-0346     4/2026