Lillian is about to lose her insurance. She needs money now to make sure that she doesn’t go uninsured. Because she is a freelance worker, her insurance is about $300 a month.
Even with insurance, Lillian needs help affording critical medical tests, so that her medical team can identify treatment options. Her doctors believe she has Von Willebrand Disease, a bleeding disease similar to hemophilia. Confirmation and identifying the type of Von Willebrand’s she has are essential for treatment. The tests for VWD are expensive, the more so because the forms Lillian’s doctors suspect she has are extremely rare.
In late September, Lillian also started showing signs of Myasthenia Gravis, a chronic autoimmune neuromuscular disease that causes weakness in the muscles responsible for breathing and movement. Without definitive diagnosis and aggressive treatment, Myasthenia Gravis can be life-threatening--especially if a patient has other major autoimmune issues.
In the last few months, Lillian’s weight has dropped dangerously, and she’s experienced other dangerously escalating symptoms that impede her ability to function, and (in the medium-term) survive. For her to have a fighting chance, she needs tests and treatment NOW.
Below are a list of cost estimates for Lillian’s most urgent medical needs (with insurance). We hope to raise enough to fully cover those necessities--even after fees--as well as to help with living expenses and some quality-of-life needs.
Lillian is a dear friend; a brilliant writer and editor; and one of the most kind and generous generous people we have the privilege to know. For years, she’s been the first person to step up, organize, and help when anyone else was in need. Please help us give her a fighting chance. Any extra money will go towards living expenses and extending the safety net that this fundraiser provides her.
$1,000 - Event monitor
$700 - Swallow study
$1,000 - NCS/EMG
$1,500 - Renal imaging
$1,500 - MRI (head)
$800 - CT (head)
$900 - Three months of health insurance
$2,200 - Copays + transport to and from appointments.
$100 - Medical ID bracelet
$200 - Clothes. Literally nothing fits anymore because of illness-related weight loss.
$200 - First aid supplies. Even small wounds hemorrhage, and a small cut could land her in the ER, if left untreated..
$1,500 - Three months of medications.
Total before funding fees: $10,700
We are adding an additional $300 to hopefully cover the fees.
More information on the possible diagnoses they’re testing for:
Von Willebrand Disease
VWD Type 2A specific