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Living with Neurofibromatosis: Alicia's Battle with Chronic Pain

Updated: Oct 16, 2023

Alicia Cossman lives in constant pain. She has a genetic disorder called neurofibromatosis (NF): her body can’t fight off tumors, so tumors grow on nerves throughout her body. She says there’s no cure and few treatments. The pain started a few years ago and it’s getting worse. Some of these tumors could turn malignant. Tragically, she has no way to find out unless she can afford the care, but without health insurance, that’s essentially impossible.

Alicia has been run in circles by health care providers and state workers, constantly receiving contradictory claims. In addition to NF, she suffers from undiagnosed severe rib pain and can’t even sleep in her bed anymore, instead resting with numerous pillows in her recliner. Even eating can be too painful.

Clearly, Alicia is unable to work, a reality that could very well change if she could acquire the necessary health coverage to treat her illnesses. She wants to see a urologist about the growing tumors that are causing her pain, but she can't without insurance and a referral.

Because our state legislators do not believe everyone should have access to necessary care, Alicia continues to live in pain and a constant state of anxiety, wondering how her elected officials can sleep at night while she can’t.

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