Since I started the butterfly chronicles I have been asked a variety of questions from Fellow butterflies. One of the most common questions I get is related to hearing loss in Turner syndrome patients and personally if I have hearing loss. For this week’s blog, I wanted to focus on hearing loss and what I have experienced as a turner syndrome patient.
For as long as I remember I have had battle ear infections and the high temps that came with them. I have had so many ear infections I think I lost count at around 45 or so. By the time I was two I had so many ear infections I had to have tubes put in my ears. The tubes did help for a while but the ear infections never went away.
Like many of you, I am sure can relate ear infections on very painful, and often I would cry because the pain was just so unbearable. You would just pray for relief then the eardrum would rupture and finally some relief. It would echo afterward and sound like everyone was talking extremely loud. I am sure some of you are reading this nodding your head thinking this is me.
That is not unusual in fact a recent study in Brazil among Turner syndrome patients stated that 88 percent of them had experienced multiple ear infections and 80 % of them had hearing loss as a result. No two Turner Syndrome cases are the same and each person will face different issues. This one of by far the most common among the Turner syndrome population.
Some will have hearing loss as a result and some will face it though out their life. When I was sixteen I had already lost over 25 percent of my hearing and needed to have my eardrum repaired as a result of having so many ear infections. This I hear very often in the support groups that I follow and for me,
it did help I have had only 4 infections since I been sixteen. I also though still battle with hearing loss and that is something I will have to address as it will get progressively worse over time.
If you or your daughter has Turner Syndrome it is important that you address hearing concerns with a medical professional and delay intervention can cause even more issues if left untreated. For more information on hearing and Turner Syndrome are for information on the Brazilin study visit https://www.healthyhearing.com/report/52877-Turner-s-syndrome-and-hearing-loss#:~:text=How%20Turner%20syndrome%20affects%20hearing.%20According%20to%20a,as%20well%20as%20conductive%20and%20sensorineu