Epidermolysis Bullosa and why I advocate
Nisha
State: California
Congressional District: CA14
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Diseases
Rare Disease, Skin Disease
Issues and Challenges
Nisha has encountered: Copay Issues, Insurance Issues
My Story
My name is Nisha, and I’m a resident of South San Francisco, CA. I was born with Epidermolysis Bullosa. EB is a rare genetic disorder in which a key protein that binds the layers of skin together is missing. EB patients have extremely fragile skin and recurrent blister formation that can result from even the most minor friction or trauma.
Growing up with EB was a challenge – I endured frequent wounds, painful walking, itchiness, persistent scarring, and invasive questions. As a child, I dreaded bath time and the pain I’d experience from the application of bandages and draining of blisters. I remember how much I wished to be able to throw on clothes immediately after showering, just like everyone else I knew.
While the condition has been easier to manage in adulthood, some days are easier than others. Even so, I’m one of the luckier ones; I have a mild form of EB known as EB Simplex. Those suffering from EB’s most severe forms face much more: extensive sores that necessitate head-to-toe bandages, esophageal issues, the inability to use their hands or feet, and dangerous (sometimes fatal) infections.
Currently, there are no FDA-approved treatments, though current clinical trials are promising. The care supplies that some EB patients need can cost up to thousands of dollars per month, which insurers sometimes refuse to cover. I’ve experienced such denials, which have led to discomfort and unexpected expenses.
I know that we all deserve a better system.
My Motivation and Inspiration
For most of my life, I kept my EB hidden from almost everyone – I stayed silent about it to avoid being judged, pitied, or treated differently. However, over the last couple of years, I’ve realized that by being more open about having EB, I can raise awareness for the condition and do my small part in educating others about the differences that exist among us to build a more understanding culture. And awareness is the first step towards securing much-needed funding for treatments for EB and other rare genetic diseases. So, I told my story on social media during EB Awareness Week in October 2019. A month later, I was interviewed on camera about my experience living with EB at the San Francisco Rare Disease Film Festival, which was shown at future festivals. And since February 2020, I’ve been sharing my story with members of Congress to encourage them to support policies that benefit rare disease patients. Now, I’ll keep using my voice to bring the EB community closer to a cure.
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