When Rare Is Personal: A Mother’s Call for Mental Health and Research Equity
Nejla
State: Pennsylvania
Congressional District:
Diseases
Blood Disease, Cancer, Rare Disease
Issues and Challenges
Nejla has encountered: Copay Issues, Insurance Issues, Mental Health Access, Rare / Underserved Disease, Caregiving, Suicide / Self-harm
My Story
My name is Nejla Abbed, and I am a mother of three. I tell my story not just as a parent, but as a witness to both the hope and heartbreak that our healthcare system can deliver.
Thirty years ago, I lost my sister to blood cancer. Years later, my sister-in-law survived the same disease—thanks to progress made possible by research and advocacy. But my fight didn’t end there.
Two of my children live with a rare genetic predisposition to tumors—called pheochromocytomas and paragangliomas. These conditions affect about 1 in 2,500 people, and up to 40% of cases are hereditary, like my children's. Yet they're often overlooked or misdiagnosed for years.
My daughter Jasmine’s diagnosis was repeatedly missed. By the time they found her tumor, at age 13, it was flooding her system with chemicals that trigger the fight-or-flight response. The doctors likened it to being held at gunpoint every minute of every day. She developed severe anxiety and depression. Her tumor was removed in 2020 at Sloan Kettering in New York, because we couldn’t find the specialized pediatric surgery she needed in Pennsylvania. As a result, we had to travel to NYC, incurring additional out-of-pocket costs and separation from my other two children.
Two months after surgery, Jasmine needed urgent mental health support. We waited five days in an emergency room for a bed to open at a state institution. When she was finally admitted, the system was so overwhelmed and underfunded that she did not receive meaningful care. After her stay, Jasmine required outpatient treatment. But because her mental health needs, though critical, were not covered or treated as essential, we had to pay out of pocket.
This isn’t rare. Nearly 70% of kids with rare diseases face serious mental health struggles.
My son, Kaiden, was diagnosed with a neck mass at age 10. By age 17, we learned he had three tumors in his head and neck.
We went to the Cleveland Clinic, where a surgeon had more experience with these rare tumors. Because of the serious nature of the condition, multiple sets of testing were required. As we made repeated trips to Cleveland, the travel and lodging costs quickly piled up. On top of that, insurance denied coverage for three medically necessary scans—despite appeals from his doctors. We paid for these scans out of pocket because they were essential to giving the surgical team the best chance of success.
Healthcare systems—and especially insurance companies—often don’t recognize or understand the nuances of rare diseases. This is the reality for rare disease families: nearly 1 in 3 patients is denied critical medical testing by insurance providers.
Kaiden underwent a high-risk surgery that left him with permanent damage—affecting his speech, swallowing, and blood pressure regulation. After a month in the hospital, he came home on a feeding tube, unable to speak well, and constant drastic and dangerous swings in his blood pressure leading to severe pain and risk of stroke or convulsive tremors.
I was his sole caregiver—managing medications and emergency protocols during crises, handling feedings, and making sure he got to all his doctor and physical therapy appointments.
What should have been a joyful milestone—Kaiden’s senior year—became a fight for survival, physically and emotionally. He has relearned how to eat and speak, but he carries the emotional weight of what he’s lost, and the unshakable knowledge that genetic disorders don’t go away. That reality lives with our family in every appointment, every setback, and every insurance denial.
Rare diseases affect nearly 1 in 10 people. Yet fewer than 10% have an FDA-approved treatment. Funding is scarce. Mental health support is nearly nonexistent. And insurance regularly fails families like mine.
That’s why I’m here today—not to ask for pity, but to request progress. We do not need more proof. We need action.
I am asking for two things:
1. Increased federal research funding for rare diseases, especially pheochromocytomas and paragangliomas. These conditions are under-researched, often misunderstood, and desperately need targeted support. Innovation can’t happen without investment.
2. Guaranteed, covered access to mental health care for all patients navigating complex or chronic medical conditions because mental health is often ignored, even when it’s essential to healing.
I represent one family, but I speak on behalf of thousands. We are not anomalies.
Families living with rare diseases are dealing with medical trauma, financial devastation, and systems that treat mental health as optional. We are navigating a system not built for us.
With action, we can change this story.
My Motivation and Inspiration
My children and humanity.
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