Addressing a prevailing narrative through the lived experience of women with IgG4-related disease
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As a condition traditionally seen as mainly affecting middle-aged men, three women from the US with IgG4-related disease, discuss their lived experience, and their hopes for more targeted research into how the condition specifically affects them as women. Mahsa Pazokifard, Kim Skelly and Alex Streczyn share their important insights of living with IgG4-releated disease as a woman
Written by Emma Bishop
Interview with Mahsa Pazokifard, Kim Skelly and Alex Streczyn
While not a new disease, IgG4-related disease (IgG4-RD) is fairly newly identified, first described in 20011, and is still relatively under-recognised and often misdiagnosed due to its diverse and overlapping clinical manifestations.2 It is commonly cited in medical literature as predominantly affecting middle-aged to elderly men.3 This can mean that the women who are diagnosed with the condition can feel neglected, isolated and under-represented. “The prevailing narrative is still that it mainly affects middle-aged men” notes Alex.
For all three women a lack of targeted research into how IgG4-RD affects women is a significant challenge, impacting diagnosis and treatment. “When I initially researched my condition, I read countless articles that solely spoke to the male experience. This merely kept me in the dark as to what females experience and what my disease path may look like. I also believe that this lack of research regarding women with IgG4-RD significantly delays diagnosis, often times providing a life altering cancer diagnosis and even unnecessary treatment, before an IgG4-RD diagnosis is even considered. Not only does this delay being diagnosed, but it also delays starting treatment, both of which directly influence the disease physically, contributing to the overwhelming anxiety, isolation and hopelessness that a rare disease diagnosis can carry” says Kim.
“I often hear ‘we don’t know enough’ in regard to questions I ask that specifically relate to my concerns as a woman”
Alex
Mahsa believes the “older white male narrative” can be damaging not just to younger people, but especially damaging to women with the condition. She says, based on the available information on IgG4-RD, “doctors may dismiss or gaslight female patients, saying that our symptoms may be attributed to hormones or stress.” Not receiving a timely diagnosis can lead to more serious complications and organ involvement/failure.
The women believe a lack of research can affect how the condition is treated.
“Most research studies have been conducted utilising male patients with next to no studies involving women. Male and female bodies are inherently different, even in healthy individuals”
Kim
Kim questions whether there is a more effective treatment for women, and if current treatments affect women more adversely than men. “We can’t answer these questions due to a lack of research on this topic.”
“A lack of research leads to less publications on what works and what doesn’t. A lack of research can be very damaging to all patients when it comes to getting diagnosed, and then again when it comes to being able to receive treatment, or even to get it approved by our insurance companies.” says Mahsa.
The women would like to see more inclusive research, involving women, different age groups and ethnicities, and people with more complicated situations, such as multiple diseases alongside IgG4-RD.
“Living with an invisible illness is one of the most challenging things I have had to deal with.
It is very hard to look “normal” and “good” to people on the outside but feel very different on the inside.” says Kim.
She feels that managing the disease can be more difficult as a woman, as although she experiences the same day-to-day symptoms a man would, those symptoms can be increased and exacerbated during her menstrual cycle. She also notes how challenging it can be for a woman in particular, to experience a physical change to her body.
“Not only has my body had to recover from an emergency surgery which significantly altered how I look, my weight fluctuates depending on what medications I am taking or when my menstrual cycle is. Women are often more self-critical when it comes to their body physically changing. For me, this drastic change to my physical appearance had a negative effect on my mental health.”
Kim
Alex says living with an invisible illness can be challenging as “people don’t understand your limitations and it’s frustrating to always have to explain that I can’t do things the way other people do.” She says no one understands the deep fatigue or narcoleptic-like episodes that occur during flares or relapses. It affects the way she works and accommodations can be difficult to obtain.
“I can no longer be the powerhouse that most women are expected to be.”
Alex
A lack of understanding and awareness from society can prove challenging for women with IgG4-RD, but many also face a lack of knowledge from medical professionals; the ones in which responsibility for diagnosis and treatment is placed. While Alex feels fortunate now to have a medical team she trusts and who she describes as “excellent advocates”, she has experienced times where she hasn’t felt heard or understood.
It’s a similar story for Mahsa, who says dealing with doctors who don’t have an understanding of IgG4-RD has caused stress and disease progression. She now ensures she asks questions prior to booking a doctor’s appointment so she can be confident of their knowledge about the complexities of her condition.
Kim says that “an initial lack of knowledge and understanding of my disease significantly impacted my mental health. The sheer fear and anxiety that came with an initial metastatic ovarian cancer diagnosis was traumatising for myself, my wife, family and friends. This mental rollercoaster due to a lack of knowledge of the disease was by far the hardest part of my journey so far.” She believes this is in part due to the widely held belief that this still mainly affects middle-aged men. “As a woman in my 30s, I don’t believe that IgG4-RD was even considered in my case initially, and that stems from a lack of knowledge among medical professionals as well as a lack of research.” As Mahsa notes, “women and young children—both boys and girls, fall through the cracks because of this narrative.”
Living in the US, all three women have experienced challenges with insurance companies with regard to obtaining treatment and see this as negatively impacting their lives. It has proved challenging at times for them to obtain the treatment that best works for them and has caused physical and emotional strain.
“I would like to see more representation on panels, less propagation of the “mostly middle-aged men” narrative which I think blinds medical professionals to the plight of their suffering patients who have this disease. Early diagnosis is crucial. Once diagnosed, the damage that’s already been done cannot be undone.”
Alex
“I’d like to see more inclusivity of female patients in studies and trials and more publications on women and children being impacted by IgG4-RD. IgG4-RD is not sexist, it’s not racist, it’s not ageist, it’s not religious or political and it does not limit itself to your pancreas or lacrimal gland. It can be found in any tissue, any gland, any capillary, any artery and any organ. If IgG4-RD is not exclusive, then why are we making it so?”
Mahsa
“As a woman living with IgG4-RD, I would very much like to see more research that includes women and how the disease affects us. I would also like to see more education of medical providers on this rare disease, specifically the recognition, diagnosis and treatment of it. I am not the only female patient who had a serious, potentially life altering cancer diagnosis before officially being diagnosed with IgG4-RD. The toll this took on not only my own mental health, but that of my loved ones and friends could have possibly been prevented if this condition was more well known.”
Kim
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