ENERGY IN ACTION – EPISODE 034
Meet The Mito Girl
Daniela Gallo shares her journey of living with mitochondrial disease while balancing motherhood, working, spreading awareness and caring for herself.
Can you share your diagnosis?
I have Kearns Sayre Syndrome (KSS), which I was diagnosed with four years ago, at the age of 31. I started showing symptoms when I was 12 years old, in the form of a droopy eyelid. Doctors speculated that muscles just didn’t develop well. And then I had an eye infection, went to the hospital and the ophthalmologist asked me to follow his finger so he could check my eye movement. I was surprised to learn that I had no ocular movement. I saw another specialist that diagnosed me with a mitochondrial disease called chronic progressive external ophthalmoplegia (CPEO).
Do you see local specialists or do you travel for care?
I’m lucky because I live in a city where we have a hospital linked to the university. There are specialists in the metabolic and genetics departments where I follow up. I am in touch with people from Italy and I know it’s not really straightforward there.
How does it work for you being a working parent with a rare disease in Switzerland?
It’s not easy because I’m also a single mom. But I’m lucky and I know I am. My kids Dad and I have a really good relationship and share custody. Our kids stay one week with me and one week with him. This helps me to have the time to recover in the off week. When it comes to work, I work part time because full time is impossible. I think I have found a good balance. I think it takes a lot of planning, a lot of listening to your body, really recovering when you need it. If you need to laugh, laugh. If you need to cancel an appointment, cancel.
Where do you get the bravery and grit to be honest about being a working mom with a rare disease on social media?
It’s my outlet. I felt really lonely after my diagnosis. I was left alone, battling this disease. I came across Facebook groups that were life saving for me. They helped me understand more about the disease and reassured me of a lot of things. Having that supportive network was essential. One of the reasons why I started posting on social media was simply because I wanted to share with people what it was like living with mitochondrial disease. But I’m also a mom, I’m a woman, I work. There are so many other things besides the disease. I don’t want people to feel alone, so I share what I go through to help others not to feel so lonely in this process.