California Woman with Rare Facial Pain Seeks Help

By Pat Anson, Editor

People in chronic pain often live isolated, lonely and financially challenged lives. Every one of their stories is compelling, but we recently learned of one pain sufferer who could soon be homeless if she doesn’t get help.

Hannah Lee is a 29-year old Los Angeles woman who suffers from a rare facial pain disorder called Atypical Trigeminal Neuralgia (ATN), which is sometimes called “the suicide disease” because of how painful it is. Hannah’s pain started in 2012 as a burning sensation in her eyes, and has now spread to her scalp and all of her teeth.

Hannah is in pain 24 hours a day and medication only gives her partial relief. The pain is so excruciating that Hannah says there were times she “wanted to gouge my eyes out.”

“I'm really frightened about my future. I try to maintain an upbeat and positive vibe when I interact with everyone. But the truth is I'm really scared of being in so much pain and helpless, and being so close to homelessness which I can't survive while in this much pain,” Hannah said.

Hannah’s case is all the more disturbing because she has little money, no family and few social contacts. Hannah grew up as a foster child in Los Angeles County, living in different group homes until she reached the age of 18, when she was “emancipated” from foster care and began living on her own.

Hannah worked at part-time jobs, went to college at night, and earned a degree in business administration. She was well on her way to building a life and a career when the first symptoms of ATN began. Her savings were quickly exhausted as she went from doctor to doctor seeking treatment for an “invisible” disease most didn’t understand and, in some cases, refused to recognize as real.



“I'm sorry for spilling it all out like this, but the pain is so debilitating that it's taking a lot of strength out of me each time I reach out. I have asked everyone I know for help,” Hannah told Pain News Network.

Hannah currently lives in a 200 square foot efficiency unit near downtown Los Angeles that costs $680 a month – the cheapest housing she could find in a city where it’s very expensive to live. She has a part-time job as a stenographer and has Medicaid coverage, but her insurance is not accepted by the few medical professionals in the area that treat ATN.

Adding to Hannah’s woes is that she needs dental work that could help relieve some of her pain. But the cost would be well over a thousand dollars, which she simply can’t afford.

"I still can't believe this is happening to me. I'm terrified that I've been struck with a disease that, even with family and their financial support, is a hard thing to cope with. I can't do this on my own but I want to survive this very, very badly and keep living somehow,” she said.

Desperate for help – even from strangers – Hannah recently turned to GoFundMe, an online fundraising service where people can seek donations for various causes. You can read more about Hannah’s story and make a donation to her by clicking here. 

“I never in a million years thought I would do something like this, I've always been a very independent and private person and genuinely assumed that if my savings ran out and I still had this disease I would have to take my own life. But now that it's come down to it, I really want to live. I've tried everything and the last thing I can do is reach out to strangers,” said Hannah.

I can tell you that every word she says is true – her pain is so hidden, and she’s so used to not saying anything, that people often mistake that for her pretending she’s in pain,” said Ashley Uyeshiro, an assistant professor of Clinical Occupational Therapy at USC, where Hannah attends a monthly support group for chronic pain patients.

“She now has to deal with possible homelessness, being alone, financial issues, and a terrible MediCal system where she can’t get access to anything. If you can help her in any way, that would be the most amazing thing.”

People are willing to help when they hear Hannah’s story. So far she’s raised a little over $1,000 on GoFundMe. But she needs a lot more to pay her medical bills and to keep a roof over her head.

Hannah has applied for disability, but that could take years before it’s approved. And the amount she qualifies for would not even cover her rent.

“I would be extremely grateful for any help you are able to give. My hope is to pay it forward one day to other people in my situation. Thank you so much to everyone who supports me,” says Hannah.