The importance of greater awareness about IgG4-RD: a patient’s story
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In his late 50s, John DeMuro was diagnosed with an autoimmune condition called IgG4-RD (immunoglobulin G4-related disease). Here, John, who is now 71, describes how expert medical care has given him the reassurance he needs to live well with his condition. His account highlights the need for greater awareness of IgG4-RD so that patients can be diagnosed and treated
Written by Geoff Case, digital editor, RARE Revolution Magazine
Interview with John DeMuro who lives with Ig-G4
In his late fifties, John was “mystified” to see that his eyes had started to bulge outwards, and there was also an unexplained swelling on one side of his neck.
Then, as now, John works with parents and children as a therapist, so he was particularly concerned about how children might react to his altered appearance. “In the event that was not a great problem. The parents were really empathetic—I count myself lucky to have had people around me looking out for me.”
His general practitioner could not work out what was causing these symptoms, but John is grateful for the way that she networked with colleagues to look for explanations. Fortunately, his symptoms disappeared with treatment, but only temporarily. Every few months they would come back.
Soon in the hands of a highly qualified and knowledgeable rheumatologist, John was diagnosed with IgG4-RD (immunoglobulin 4-related disease), which had only recently been identified as a disease that affects multiple organs. He learned how his condition was much more than the “irritation” he had thought it was: it was something that could have life-threatening consequences. While his difficulties looked set to continue, John could at least be confident he was receiving the best possible care, informed by ongoing research.
Each time John’s test results came through, his late wife, who was a nurse, would look at them carefully. There would often be things that would catch her eye, and she would discuss these with his doctor. Without her medical background, John had much less understanding of what the results meant and worried about them less than she did. It took quite a toll on her, though, he says.
Although he always tries to be positive, John does still think about what is going on with his health. “I just don’t know how much damage the disease has done internally, to my lungs or pancreas, for example. It’s a silent disease.”
Outwardly, there is—most of the time—nothing that anyone would notice about John that would cause them to think he was unwell. “It’s not an obvious thing where people will see the outward signs and know that you are unwell and worry about you,” he says.
His symptoms have a pattern of going away and then returning several months later. “I have had coughs that have gone on for weeks, and my nose will run—the New England weather is certainly not the best for me in winter. Even if I move away, however, I will be returning here to the medical team I trust.”
John says he has total trust in his doctor, who has enormous knowledge and a reassuring presence. “I would want other people with IgG4-related disease to also have that reassurance, and to know that in the future, perhaps, there may be a treatment for future generations who get this disease.”
With IgG4-RD being a mostly invisible disease, John believes some patients might bottle up their concerns, which could be an unhealthy coping strategy. “I had my wife telling me IgG4-RD is not good. But somebody else might hear, ‘You look terrific! What are you worried about?’” That person may internalise their concerns and stop talking about them at all. How will they feel during their bad days, he wonders.
For John, this highlights the value of support groups for people living with rare or chronic diseases. He thinks these offer a space to share “commonalities” of experience, in which patients can support one other.
John takes a positive view on his experiences with IgG4-RD over the last decade and more. In fact, he believes he has had good fortune: “Of course, it was bad luck that I got it, but good luck that I live in Massachusetts, somewhere where there is such a lot of brainpower. It’s the best place in the world, I think, in that respect.”
He has heard of others who have had to travel long distances to access the care they need, and he imagines this could be a “logistical nightmare”. He wishes that there could be wider access to expertise about IgG4-related disease and feels for people who may be living with the condition in different circumstances, not knowing they are ill and not receiving treatment.
“Maybe if I were living in a different state, I would be living unknowingly with this disease.”
Good fortune may indeed have played a leading role in John’s life story so far—with an attentive general practitioner, a knowledgeable and reassuring consultant, and access to treatment—but John tempers his positivity about the future with realism.
“My grandchildren came later in life, so with IgG4-RD or with no IgG4-RD, I was probably not going to see them married. I just want to enjoy them and make sure they know who I am.”
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