September 3, 2023

My Dystonia Story, Meet Raquel Vaqas

My name is Raquel, I’m Spanish but I have been living in Italy since 2005. I was diagnosed with cervical dystonia in 2013, symptoms started early 2010. I had selective denervation surgery and since then I’ve been getting botulinum toxin injections every 4 months.

I wished to become a mother but I was afraid about how my condition could get worse, because during pregnancy botulinum toxin injections cannot be done. There is not much information about dystonia and pregnancy so I felt lost and alone.

My referring neurologist for botulinum toxin injections said to wait 3 months after injections before trying to get  pregnant but this was very stressful especially because I started to have more symptoms and pain. I had the opportunity to talk with an important Hospital (Clínica Mangiagalli in Milan) specialising in difficult pregnancy; they checked with the Poison Control Center of Bergamo and explained to me that I could try to get pregnant without waiting 3 months after injections. I was 41 years old so we decided to undergo a fertility program scheduled for  January 2022,   but we were very lucky and I got pregnant naturally late October 2021 and my last treatment was in August, so the timing was perfect!

My gynaecologist put me on maternity leave from my job due to a high-risk pregnancy so I was at home from the second month. In this way I could rest from my job and take care of myself. During the pregnancy I did my physiotherapy exercises, acupuncture and *auriculotherapy in the Therapy pain centre Piero Palagi Hospital in Florence. My daughter Martina was born on July 17th 2022 by natural childbirth taking 3 hours, my neurologist recommended natural childbirth if possible.

After childbirth, due to hormones circulating I was in great shape, I felt less pain and had better mobility. I breastfed Martina for 4 months and then in December I finally did my botulinum toxin treatment. The motherhood experience teaches me that despite dystonia we can almost achieve everything, even if in a different way and with some limitations. I found it very useful to share my emotions and concerns about my medical condition with professionals; being part of the Italian Association ARD helps me to feel better.

*Auriculotherapy (also auricular therapyear acupuncture, and auriculoacupuncture) is a form of alternative medicine based on the idea that the ear is a micro system and a external organ, which reflects the entire body, represented on the auricle, the outer portion of the ear. – Source Wikipedia


Raquel Vaqas, ARD, Italy