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My name is Indra (Netherlands)

 In Personal stories

My name is Indra

A personal story

My name is Indra, I am 41 years old and mother to my son Mees (6).

My story begins on the 14th of June 1977, when I was born at the academic hospital in Groningen. Immediately after birth, they noticed a deviation on my right arm. On the basis of what they saw alone, they quickly diagnosed me with Klippel-Trénaunay syndrome. They did want to further examine me, because they found it very interesting and at the time, there was not much known about it, but my mother did not feel like participating in that circus. She told me this story a long time ago, and unfortunately, I can no longer ask her about it.

For years, I did nothing with this information. I knew what my deviation was called and that was it. At the onset of puberty, I wanted to start taking the pill. First, I had to see a gynaecologist, because my doctor wouldn’t let me use the pill just like that. I think it had something to do with an increased risk of thrombosis. As far as I can remember, that was the only time I came back to the syndrome, not counting the times I was bullied.

At school, people viewed my syndrome as a scary disease, which often saddened me. It was not until 2011, when I was in hospital pregnant with my daughter, that they came back to the syndrome. My daughter would be born way too early, extremely dysmature, because she was not doing well. They were supposed to examine my back first because they were afraid that there could be vessels in my back as well. It was going to be a caesarean delivery and I was supposed to get an epidural. It all went so fast that there was no time for the examination and I had to undergo general anaesthesia after all. Unfortunately, my daughter was born at 28 weeks, weighing only 450 grammes. Three weeks after birth, she passed. In the three weeks, she was alive, they found a brain AVM and during the autopsy, they found another one in a different spot.

After that happened, I started to go deeply into my syndrome. I ended up at MijnZorgnet at the Radboud in Nijmegen. You could ask any question and doctors would actually answer it. I posted some questions on the website and one of the doctors sent me a private message. She told me that if I wanted a clear answer, it was best to come round. With a referral, I went to the Radboud. The doctor examined me and concluded that I did not have Klippel-Trénaunay syndrome, but ‘Van Lohuizen syndrome’. I should say that, now that I know, I haven’t done much with that information. After my daughter’s passing, I did see a geneticist because I wanted to know if the brain AVM found in my daughter could have something to do with my syndrome. I was told it had nothing to do with it, after which I left it at that …

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