A diagnosis of a rare condition such as a hypothalamic hamartoma often results in multi-disciplinary care and the team required to support the individual throughout their lifespan may involve many specialties and costly therapies. Families worry about not only health insurance coverage for expensive medications and surgery, but missing work or having to give up a career to be home to take their loved one to doctor’s appointments and therapies. In addition to worrying about monthly bills and expenses, there are often concerns about how to prepare for the long-term financial well-being of the individual. This could mean setting up a special needs trust and ensuring the individual is eligible for government benefits. For other financial topics you may want to learn more about, go to Financial Planning for a Child with Epilepsy.
For adults with HH and epilepsy, the challenges are just as complex. Does it affect your ability to work? Is an employer willing to make accommodations for your circumstances? What is your backup plan if you cannot work? Two great resources to help you answer these questions are: Disability Services and Disability Benefits Help