Riding the wAIHA rollercoaster: understanding disease unpredictability
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Azreen Iqbal’s life has been a rollercoaster of medical challenges since her initial diagnosis of warm autoimmune hemolytic anemia (wAIHA) in 2016. As a young pharmacy student living in the US, she faced a sudden health crisis that led to a complex treatment journey, and ultimately a splenectomy due to her wAIHA diagnosis. When her condition relapsed six years after onset, this was further complicated by a second diagnosis of lupus. Now navigating the unpredictability of her autoimmune conditions, Azreen has had to make difficult decisions about her career and family planning, all while managing the physical and emotional toll of her illnesses
Written by Nicola Miller
Interview with Azreen Iqbal, patient advisory board member, wAIHA Warriors
Azreen approached her thirties as a vibrant young woman who regularly worked out and enjoyed the fast-paced life of a pharmacy student. Just weeks away from graduating, and while completing her final clinical rotations, Azreen noticed her urine had taken on an “alarming brick-red colour”. Little did she know, this would be the first sign of a rare autoimmune disorder that would go on to profoundly reshape the course of her life.
After seeking medical advice, Azreen was initially misdiagnosed with a urinary tract infection and prescribed antibiotics. However, instead of improving things, her condition rapidly deteriorated. “I couldn’t even get out of my car and walk to the front door of my house without hyperventilating,” Azreen recalls. “I felt like I was going to pass out—I was breathing so heavily.” It wasn’t until Azreen’s haemoglobin plummeted to a dangerously low level that the true nature of her illness came to light.
“After feeling so unwell they did some blood tests. The next morning my doctor called me and said, ‘You need you to stop what you’re doing and go to the emergency room and get admitted asap’. Ever since then, whenever a physician calls me super early in the morning or at night after an appointment, I know instinctively it’s really bad news.”
Rushed to the emergency room, Azreen was given a plethora of tests and was swiftly diagnosed with warm autoimmune hemolytic anemia (wAIHA)—a disorder where the body’s own immune system attacks and destroys its red blood cells. “I’d never heard of this in my entire life,” says Azreen, who was fortunate to have a haematologist on staff who recognised the condition immediately. “Even my husband, who’s a physician, couldn’t believe the chances of this happening with it being so rare.”
The unpredictable nature of wAIHA would come to define Azreen’s journey in the years that followed. While some patients struggle for months to receive a proper diagnosis, Azreen was fortunate that her case was identified and treated with urgency. However, the unpredictability of her condition has remained a constant challenge. After her initial hospitalisation, Azreen’s treatment involved a delicate balance of oral steroids and intravenous medication infused over several hours. Each step of the way, Azreen faced the uncertainty of whether the interventions would be effective, and how her body would respond. “The biggest fear is the unpredictability of it,” she explains. “You just don’t know when or if it’s going to come back.”
This unpredictability has had a profound impact on Azreen’s life, forcing her to make difficult decisions and adapt to constant change.
The first crisis also brought an additional fear of cancer, after scans revealed that she had enlarged lymph nodes in numerous sites throughout her body, many of which the oncology surgeon felt were too precariously located to operate on. Thankfully with the balance of treatments to manage her wAIHA crisis, these eventually returned to normal, and cancer was ultimately ruled out, much to the relief of Azreen and her family.
After stablisation, the next six years were a period of healing and recovery for Azreen as she returned to ‘normal life’, resuming regular exercise, a vibrant social life and building a successful career. When her condition relapsed in 2022 all of this was turned on its head, as medications which had delivered her into remission six years earlier failed to bring the same relief. In close discussion with her medical team, it was decided that surgical removal of her spleen (a key contributor to her body’s autoimmune attack) was the next logical step. Shortly after she underwent a splenectomy, however, recovery was slower than she anticipated. Unlike her previous crisis, time did not bring a return to her old normality, in fact it was during this time that she received a secondary diagnosis of lupus.
This resulted in Azreen having to make the painful decision to step away from the thriving career she loved as a pharmacist. “My doctors told me, ‘You can’t be patient-facing. Your immunity is so low. You’ll be putting your body under a lot of stress. You have to make a decision whether you want to live or work'” she recounts. “It was a really hard thing to do, because I was so career-focused and was in a senior position at that time. Working from home also quickly became impossible with my pain, and energy levels and flare ups were difficult to manage. I would be bedridden for 2-3 days.”
Beyond the physical toll, the psychological impact of living with such an unpredictable disease has been immense. “The fear of the unknown is what’s the worst,” Azreen admits. “And now I juggle my lupus symptoms too. Following a splenectomy and being on immunosuppressants has left me in a severe immunocompromised state. I get sick with the drop of a hat. Any cold or virus can tank my health, making me unwell or unable to manage simple everyday things like making my own bed.”
To cope with the mental and emotional strain, Azreen has turned to regular therapy, which she credits as a crucial part of her journey toward finding a level of peace and acceptance of her fluctuating health status. “It helps to speak to somebody about what you’re going through, from a perspective of somebody that doesn’t know you and will not judge,” she says.
Azreen’s experiences with wAIHA and lupus have impacted her sense of self, as she mourned the loss of her career, but also her inability to exercise at previous levels and her diminished social circle—leaving her feeling more isolated.
“Everything from weight gain, hair loss, pain, infections and mood swings, to just constantly being tired—to the isolation from being immunocompromised—everything all at once. Whenever I am invited to a social event my immediate thought is, ‘how is this going affect my health? Will I have to travel, can I mask up, can I take all my sanitising stuff with me, what measures do I need to do before to stay well?’ It is a lot for me and my family to manage.”
This new lifestyle has been a stark contrast to Azreen’s previous social life. “I missed that camaraderie of a workplace, and I miss my previous social interactions,” she says. Simple activities like going out for sushi with friends have become fraught, as Azreen must be extremely cautious about what she eats to avoid getting sick. The unpredictability of Azreen’s conditions has forced her to constantly weigh the potential risks and consequences of any activity or social interaction. This has led to a profound sense of isolation, as she has had to distance herself from the very people and pursuits that once brought her joy and fulfilment.
The unpredictability of wAIHA has also complicated Azreen’s personal life. As she and her husband consider starting a family, they must navigate the potential risks and challenges posed by her autoimmune conditions.
“I’ve always wanted to have children,” she says. “Unfortunately, I am considered a very high risk for pregnancy. Physicians warned me that pregnancy can inadvertently cause a relapse, or my body itself can harm the foetus. Having to think about whether you are harming your unborn child or even yourself is devastating. But a lot of the medications aren’t conducive to trying to conceive or if you are pregnant—timing is everything.”
Azreen’s story also highlights the challenges faced by both caregivers and loved ones navigating the unpredictability of rare diseases. Her husband, a physician himself, has played a vital role in her care, providing unwavering practical and emotional support. However, Azreen acknowledges the toll it has taken on him as well. “People don’t discuss caretaker fatigue,” she says. “They saw what I was going through, and it took a mental toll on them too—both my husband and my parents, whom, I am lucky live close to me to help while my husband works as a busy physician.”
The treatments and specialised care required for Azreen’s rare autoimmune diseases have also not been without additional financial burden on her and her family, particularly with her loss of income. Fortunately, her husband’s job has provided financial stability which has been crucial, but Azreen is aware that many patients lack the resources to access the care they need, highlighting the often-overlooked economic toll of uncertain health outcomes.
The very experience of being human means living with a degree of uncertainty and unpredictability in our lives. In many ways this is part of the fun of life, that we don’t know what lies ahead in every given moment. But when it comes to our health, uncertainty can be deeply damaging and devastating to our way of life. It requires a solid personal support network, a connected healthcare team, financial stability and much more to help overcome some of the challenges it presents. Azreen is thankful to have benefited from all of these and looks ahead to a new future, albeit uncertain, with great hope that it includes many great things yet to come, including one day a child of her own.
wAIHA Warriors
Articles within this digital spotlight are for information only and do not form the basis of medical advice. Individuals should always seek the guidance of their medical team before making changes to their treatment.
This digital spotlight has been made possible with financial support from Johnson & Johnson. The content was developed in collaboration with wAIHA Warriors. All opinions are those of the contributor. RARE Revolution Magazine retains all copyright.
CP-485653 | November 2024
