EB Connect Spotlight: Meera Shukla

Our one-of-a-kind EB Connect community is made up of individuals and families from around the world who are navigating life with EB. The EB Connect Spotlight series highlights these individuals and their unique stories.  

Today’s spotlight shines on Meera Shukla, a Generation Resource Planner with a PhD in Electrical Engineering. She lives with Dominant Dystrophic EB (DDEB) and resides in Indiana, USA.

1. When were you diagnosed with EB? Please tell us about you and your family’s journey learning about the diagnosis.

I was born with EB and as far as I know, my diagnosis came within few months after I was born. I didn’t have skin on my arms and feet when I was born. Being born in a family of doctors, I received medication and treatment and dressing. But my family wasn't aware of EB before my birth.

My parents have gone through a lot - wasn’t easy for them to do the dressing and see me in pain.

2. You’ve earned a PhD in Electrical Engineering –that’s amazing! What inspired you to pursue that field of study?

I liked science and maths and I chose the opportunity which I got.

3. Did you experience any challenges with schooling and your EB? How did you overcome them?

Yes - main issues were of peer-to peer-rejection; social acceptance was tough. It was really difficult as I've experienced people trying to stay far from me as they're afraid it's contagious and the scars & bandages on my skin made me look different.

As I grew, it seems I met more mature people. Was able to explain to people that my skin condition isn't contagious.

I had become partially deaf since I was in sixth grade and had undergone 13-14 ear surgeries. Surgeries were hard as the tape fixed for anesthesia when removed also removed the skin on my face. I can hear now very well - feeling so blessed.

4. If you could give one piece of advice to others with EB who are considering pursuing a graduate or PhD program, what would it be?

Where there’s a “wish”, theres a way! No matter what comes … each and every effort matters.

5. You’re now working as a Generation Resource Planner. Could you explain what that job entails?

Yes - I’m in Generator Interconnection study engineer and perform analysis to ensure generation resources connect to system without adverse impact.

6. How do you decompress after an especially tough day?

Walking, deep breathing and roller massager excercise.

7. What are your hobbies?

Canvas oil painting, sewing, stitching and listening to music.

8. Have you ever met another person with EB? If so, what was that experience like?

Yes - my cousin sister’s daughter. I felt empathy. 

9. Please share with us your dreams and aspirations – both immediate and long term.

To be helpful to people especially those with EB.

10. What message would you like to share with others impacted by EB?

What doesn’t kill you makes you stronger.

11. What message would you like to share with those who don’t live with EB?

EB is not contagious. 

Thank you, Meera, for sharing your story! You can connect with Meera by sending her a message on here profile here.

If you would like to contribute to the EB Connect Spotlight series, please send a private message to Aigerim!