Key takeaways about living with wAIHA
- Warm autoimmune hemolytic anemia (wAIHA) is a rare, life-threatening disease that occurs when a person’s immune system releases autoantibodies that attack and destroy red blood cells.
- This causes anemia, or a low red blood count, which leads to episodes of profound fatigue, dizziness, shortness of breath and an increased heart rate.
- wAIHA can take a psychological toll, as patients often have to curtail everyday activities and may feel isolated and alone.
- There’s no cure for wAIHA, but a new treatment from Johnson & Johnson that attacks the root cause of the disease was approved by the U.S. Food & Drug Administration in August 2026.
While visiting her family for the holidays in December 2023, Jenn Leaning woke up feeling dizzy. She brushed it off, thinking she must be dehydrated.
But as she stepped into the bathroom to get ready for the day, she was hit with such deep fatigue, she lacked the strength to brush her teeth.
“I thought I was going to pass out,” recalls Leaning, Manager, Clinical Trial Coordination, Johnson & Johnson MedTech.
Hours later at the emergency room (ER), lab work showed that Leaning’s hemoglobin, the iron-rich protein in red blood cells that delivers oxygen throughout the body, was critically low. She urgently needed a blood transfusion.
While waiting for the transfusion in a hospital bed, Leaning posted about her mysterious health scare on social media. She immediately received a text from Carrie Cameron, Senior Director, Clinical Operations & Program Management, Johnson & Johnson Innovative Medicine.
Although the two colleagues work in different sectors at Johnson & Johnson, Cameron had mentored Leaning at a previous company, and they’ve always kept in touch.
“Do you have wAIHA?” Cameron asked.
It wasn’t just a wild guess. Cameron recognized the disease’s main symptom—intense fatigue—because she had experienced it herself.
In 2002, Cameron was diagnosed with wAIHA, or warm autoimmune hemolytic anemia: a rare, immune-mediated disease that causes the immune system to create autoantibodies to target and destroy healthy red blood cells.
For patients, that typically means living with unpredictable flare-ups of exhaustion, dizziness and shortness of breath, followed by periods of remission.
Leaning had never heard of wAIHA, and the doctors in the hospital didn’t mention it as a possible explanation for her symptoms. Yet further testing revealed that she, too, had the disease.
“It was very daunting to think this was something I’m going to carry for my entire life,” recalls Leaning. “The thought of my own immune system attacking my red blood cells is crazy. I remember thinking, ‘What am I going to do? What does this mean?’”
I can’t pretend wAIHA doesn’t exist just because it’s invisible.
“Carrie snapped me out of it,” she says. “I was like, ‘I can’t pretend wAIHA doesn’t exist just because it’s invisible.’”
No cure exists for wAIHA, though treatments (e.g. corticosteroids and B-cell depleting agents) can help manage symptoms. In August, the U.S. Food and Drug Administration approved the first therapy that targets the underlying cause of the disease by decreasing the number of autoantibodies circulating in the bloodstream.
Navigating a rare disease like wAIHA is a unique experience for every patient. But as Cameron and Leaning have realized, it helps to have the support of someone who shares the diagnosis.
Here, the two women share their personal journeys with wAIHA, from the daily challenges they face to their advice for others who live with this complex condition.
Q:
Can you share some background about your wAIHA personal story?
A:
Cameron: I developed wAIHA right after I delivered my third child. I thought the tiredness was just how it was. All the moms I knew always talked about being tired.
It wasn’t until my husband followed me up the stairs one night when I was carrying the baby that I realized my fatigue wasn’t normal. “Something is wrong,” he said, as he noticed my exhaustion.
After seeing a hematologist and receiving an IV iron infusion, my doctor took my hand and told me I had a chronic condition we needed to treat seriously. He warned that if I dismissed symptoms as “just being a tired mom,” I might end up hospitalized.
Leaning: My wAIHA is a bit unique because I was told it’s part of a larger autoimmune condition known as Evans syndrome, which is a combination of wAIHA and something called immune thrombocytopenia, or ITP. It attacks platelets in addition to red blood cells, so it’s a double whammy.
I have a hematologist who supports me and who I work really closely with to help prevent symptoms from flaring up. But whenever I stand up too quickly and get a little dizzy, I can’t help but panic and think, “Is my wAIHA coming back?”
Q:
What were your earliest symptoms of wAIHA before you realized something was wrong?
A:
Cameron: It would take every ounce of energy to wake up and get the kids dressed and fed. And then I’d collapse on the couch while they played or watched TV. I had never experienced fatigue and shortness of breath like that before.
After being diagnosed, it was really confusing to me. How can this one disease make you feel so exhausted? I had to give myself a pep talk just to get out of bed.
Leaning: I would take naps for two or three hours, wake up and feel like I could sleep another 12 hours. My body just couldn’t catch up.
I was also frequently out of breath and would need to sit down after something as easy as carrying groceries from my car to my apartment. Little things like that were exhausting. It was confusing and frustrating because, from the outside, I didn’t look sick.
Q:
Has wAIHA caused you to change your usual routine or cut back on things you enjoy?
A:
Cameron: As a young working mom, we want to think we can do everything. But I had to rely on others to help me when I wasn’t feeling well. I had to learn that it was okay to ask for help, and that it was okay for me to rest and recover.
Finding out I had wAIHA really changed my leadership style too. Before, I was like “Go, go, go!” at all costs. “You can sleep when you’re dead,” basically. Now I think I’m a much more open, caring leader, making sure my team doesn’t get burned out.
Leaning: I used to be a huge fan of playing beach volleyball. After I was diagnosed, I would have to leave early or step out, so eventually, I just stopped going. Not being able to do what I used to do was hard.
Q:
Have doctors and other healthcare providers been supportive and helped you understand wAIHA?
A:
Cameron: My physician did a really good job of explaining how wAIHA affects my body but not how to educate others about the disease. When you tell someone you’re tired, they’re like, “Oh, you mean you didn’t sleep well last night?” I had to do a lot of research on my own about the disease in order to help educate people.
Even now, if I present to the ER for a severe illness, I have to educate them about the additional tests I need to undergo. Sometimes, I have to actually message my hematologist or a lead nurse, saying, “Hey, I need your help because this ER physician isn’t listening to me.”
Leaning: I remember going to my primary and she was like, “I don’t think I’ve ever heard of that before.” She had to do a search for “wAIHA.”
Fortunately, my hematologist is great. Early in my diagnosis he said, “I’ve only had a few cases in my entire career,” but he was aware of the disease and how to manage it, which was very reassuring.
I’ve had to learn over time to not let this condition win. Do I get worried? At times, absolutely.
Q:
How has living with wAIHA affected your mental health?
A:
Cameron: I’ve had to learn over time to not let this condition win. Do I get worried? At times, absolutely.
But I journal every day on gratitude. I really center myself around things that I’m appreciative of, things that are going well and my goals. When I feel like wAIHA is affecting my mental health, I go through those goals to see how far I’ve come and allow myself to feel good about those accomplishments.
Leaning: Therapy is a big part of this journey for me. It’s helped me see that I can only do so much to control the disease. It’s in my body. I have it. It’s not going anywhere—at least not right now.
So the only thing I can really control is how I approach wAIHA or respond to it. Am I going to spend time worrying about if it’s going to flare tomorrow, or am I going to try to enjoy what I can do today? That’s helped me get past the anxiety and fear.
It’s challenging when people hear “anemia” and assume that I just have an iron deficiency and should eat more leafy greens and red meat and take iron supplements.
They don’t immediately understand that the kind of anemia that comes with wAIHA can be life-threatening if you don’t treat it quickly. That disconnect is difficult to process.
Q:
What advice do you have for healthcare providers that could help them better understand the patient experience?
A:
Cameron: My advice is to listen to your patient; get to know what’s important to them and how wAIHA is disrupting their daily life.
Then offer ways you can support them between visits. Let them know how they can contact you and your response time—and how you can help them advocate with physicians who don’t know about the condition.
Leaning: I go to many more doctor visits now than before I was diagnosed. We obviously go over my lab results, but my hematologist will also ask me things like, “How’s your dog? Are you spending time with your family?”
I think he’s looking for little hints about my energy, but it still shows that he cares. I feel that human connection can be just as meaningful as the treatment itself.
Otherwise, doctor visits can feel rushed. They meet with you for 10 minutes, and they’re out the door. Granted, it’s not the doctor’s fault. They’ve got so many patients to care for. But even two personal questions can make the biggest difference in the world.
Q:
What would you want others living with wAIHA to know?
A:
Cameron: You have to have a strong support system. You really have to know what is important to you. My son plays football, and it was really important to be able to go to all of his games. I have to plan ahead and ask myself, what am I going to do to make sure that I can be my best self and give my best effort to try to be able to make those games?
Learning that taking care of yourself first so you can take care of others was also a real lesson for me—and also that others want to help. It’s hard to acknowledge that sometimes, but you just have to ask.
Leaning: The important thing with wAIHA is to not let anybody, including yourself, minimize what you’re experiencing. Listen to your body and advocate for yourself. You don’t need other people’s permission to take your own health seriously.
