Guest Voice: Thanks to an IgG4-RD diagnosis, I’m finally living again
I was bedridden for much of my 20-year diagnostic journey
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My name is Silvia Borgers, and I live in the Netherlands with my husband, our dog, and our cat. Our children have left home, but thankfully, we still see them often. That is the advantage of living in a small country like the Netherlands.
My lovely family has been my lifeline to the outside world for a long time because I was almost bedridden for over eight years without a known cause.
I am very creative, and I work on art practically every day. I even made art while lying in bed. I also love gardening; I have a vegetable garden on my roof terrace, which I started after I finally got treatment.
For a long time before my diagnosis, my persistent symptoms went unrecognized. Every time I went to a doctor with my concerns, they examined me. Sometimes they did a blood test, too, but usually, I was just sent away with the comment, “We can’t find anything; it will probably go away on its own.”
A turning point
In 2024, I was finally diagnosed with IgG4-related disease (IgG4-RD). My journey to this diagnosis took at least 20 years — 20 years of becoming increasingly ill and tired, with much misunderstanding from those around me. Whether it was neighbors, acquaintances, or strangers, everyone had an opinion.
I was also diagnosed with Löfgren syndrome in 2017, but it turned out that I’ve probably had IgG4-RD for much longer — certainly since the birth of my daughter, who is now 23.
Partly because I lacked my IgG4-RD diagnosis, which is difficult to get, I endured being misunderstood for a long time. But I think another part of the problem is that women who complain of tiredness are seldom believed, especially when tests are negative or unclear.
After a surgery on my trachea, which had narrowed to 3 mm due to inflamed tissue, IgG4-RD was found in that tissue. Since then, I have been treated in the same hospital where doctors performed the biopsy and operation on my windpipe.
That was a turning point in my life. I went from being almost bedridden and unable to participate in society to now being able to do everything again. I can cycle, walk, garden, and work. Who would have ever thought? Not me! I’m so grateful.
I would love to tell you more in the future about how I am doing now and what my experience has been like so that more people, including medical professionals, can learn from my journey.
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Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.
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