tuberous sclerosis Archives - Inspire Corporate

Epilepsy can happen to anyone at any age
Patient insights, Marketing, Patient communities

Epilepsy can happen to anyone at any age

Epilepsy can happen to anyone at any age By Kathleen Hoffman, PhD, MSPH Seizures are frightening for those who have them, for their loved ones and for onlookers. Descriptions of epilepsy go back as far as the Sumerians in 2500 BC. Expressing awe and dread, Babylonians, in 1050 BC, called seizures “ṣibtu” translated as “possession” and ṣabātu, “to seize” as in being possessed or seized by the gods.1 Although we still use the term “seizure,” today, these events are now understood. Arising from a disruption in the delicate balance between the internal and external environment of a [...]

Trying To Find More Answers About Tuberous Sclerosis Complex

Trying To Find More Answers About Tuberous Sclerosis Complex By Kathleen Hoffman, PhD, MSPH Tuberous Sclerosis Complex (TSC) is a “rare” genetic disease: According to the Tuberous Sclerosis Alliance, Inspire’s community partner, “At least two children born each day will have tuberous sclerosis complex.”1 Classifying a disease that affects a million people worldwide as “rare” doesn’t comfort patients with TSC. Created by mutations in one or two genes, TSC1 and TSC2, its manifestations vary widely depending on the nature of the mutation, which is why it is called “tuberous sclerosis complex.” It’s a complex genetic disorder. It [...]

Rare Disease and Social Media: Making Connections

Rare Disease and Social Media: Making Connections Being Alone and Disempowered Keeping illness, pain and suffering a secret for years is the reality for many people with rare diseases. Now, on social media, they are writing about it, sharing the desperation and the hurt. And they are finding each other in the process. Joy Aldrich kept her diagnosis of Charcot-Marie-Tooth a secret from everyone (including her physician) for 33 years.1 Dawn Nellor, a patient with pulmonary sarcoidosis, describes one reason for this, “The behavior of past appointments with physicians…have numbed me to their raised eyebrows and [...]