You do not need to have all the answers or become an expert in TSC to navigate you/your loved one’s care. You can empower yourself by clearly advocating your understanding of TSC and what you need to better understand, risk and benefit of treatment, short- and long-term outlook and how to prepare and balancing insurer- or pharmacy-based requirements.
Unfortunately, not every situation is ideal, and stress can lead to strong emotions. During those times it is important to focus on the goal you need to accomplish. Be realistic given the situation and options available to help redirect and find a solution to the current problem. Always remain calm when situations have escalated to anger and frustration. Most institutions and clinics have patient advocates. If you do not feel comfortable or agree with a treatment plan, you can always request to speak to an advocate prior to leaving (this is even true if you are in the emergency department!).
Because TSC can affect many different organ systems, you might find yourself under the care of many different medical specialists. Most of these specialties are separated between adult and pediatric patients. Two medical specialties are crucial to helping you manage and coordinate all these specialists: your internist (adults) or pediatrician (children). These clinicians are specially trained to manage the overall health of an individual, including helping you connect with and get the most out of your relationships with specialists.