“Aniridia affects all aspects of my life but I don’t doubt my abilities and continue pushing my boundaries“

For Rare Diseases Day 2021, the key messages are; Rare is Many, Rare is Proud, Rare is Strong. We gathered stories to showcase how those with aniridia lead their lives, proudly and with strength. These stories will raise understanding of aniridia with members of our aniridia family and beyond.

Faith kindly reached out to us to share her story of how proud she is herself.

Hello.

Hi name is Faith and I was born with sporadic aniridia. I am 39 years old, I’m a wife, mother, and in my line of work I’m a licensed massage therapist.

Aniridia affects my daily life in that I have to consider my surroundings when with other people. If I’m alone I will keep shades closed and use very little light. If I’m with my family I will have shear shades closed to help reduce glare but still allow them to enjoy the daylight.

It has also caused me to be very detailed on how I conduct my day. If I need to go somewhere I have to choose my preferred transportation, time restraints, weather, time of day, and safety precautions.

Honestly, aniridia affects all aspects of my life but I don’t let it define who I am. This last year because of the pandemic I lost my job and have had to stay home with my son to assist him with his virtual school year. I’ve learned that I can adapt when I was fearful I would be unable to assist him. I’m really proud because he’s done very well and I find I’ve been able to navigate tasks the other sighted parents have struggled with. I try and remind myself not to doubt my abilities and that I need to continue pushing my own boundaries.

The pandemic has been such a struggle for so many people but it is so heartwarming to hear how Faith uses the strength and resilience, aniridia has given her to be a truly proud parent.

Warmed by Faith’s story? Share your story on Rare Disease Day or any other time tell your story on our blog! It all goes go towards raising awareness of aniridia and showcase the amazing things those living with aniridia can achieve.