Tuberous Sclerosis Complex
You may be a part of our life, but we refuse to be defined by you - Heather Lens
image by: Tuberous Sclerosis Association
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Dear (Not So Dear) Tuberous Sclerosis
Dear (Not So Dear) Tuberous Sclerosis,
I despise you.
You have brought pain to my family since the day your name was so gravely spoken. Your tag line of “incurable” ripped through my heart like a million razor blades tearing it to shreds. You have made me doubt myself and my ability to care for my own daughter. Your dooming prognosis made me want to run away. I still feel ashamed when I think of those fleeting thoughts.
I have never been faced with a problem that I couldn’t fix,…
Resources
A Son’s Illness and a Mother’s Aspirations
“It’s complicated dealing with this every day,” she said. “But I make it work. As a mother, I should.”
The tuberous sclerosis complex
Epilepsy, which usually manifests during the first year of life in TSC patients, is the most common neurological disorder in TSC, occurring in 60–90% of individuals.
Dear (Not So Dear) Tuberous Sclerosis
You have brought pain to my family since the day your name was so gravely spoken. Your tag line of “incurable” ripped through my heart like a million razor blades tearing it to shreds.
TSCLife
Tuberous sclerosis complex (TSC) is a lifelong disease that causes various complications in different parts of the body, including noncancerous tumors and seizures. Living with TSC can be challenging. We are here to help.
Tuberous Sclerosis Alliance
The Tuberous Sclerosis Alliance is dedicated to finding a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected.
Tuberous Sclerosis Association
The TSA aims to support families and individuals affected by TSC in a way that suits them. We have dedicated regional support advisers, an active online community, we organise regional groups giving families the chance to meet face-to-face and we organise an annual Family Day’s bringing together professionals and updating you on the latest research.
Tuberous Sclerosis Australia
Tuberous Sclerosis Australia works to connect, inform and empower people affected by tuberous sclerosis complex as we work towards a cure for TSC.
Tuberous Sclerosis Complex International
Tuberous Sclerosis Complex International (TSCi) is a world-wide consortium of existing tuberous sclerosis complex associations and organizations, serving as an avenue to empower those affected by tuberous sclerosis complex (TSC), including individuals, families, caregivers, educators and health care providers.
Tuberous Sclerosis Program
At Children’s National Hospital, we are dedicated to providing advanced, compassionate and individualized care to children with tuberous sclerosis. With consistent care, many of our patients have a good quality of life and a normal life expectancy.
Alex's Story
Alex suffers from Tuberous Sclerosis, seizures, Autism, and very severe self-injurious behaviors. He hurts himself so badly that he can't live with us anymore. After the heartbreak of placing him outside the home, now we're having to fight an uphill battle for the medicine that may actually help him.
Land of La
Our daughter Emmaus is affected with a rare disease called Tuberous Sclerosis complex. Read about our experience
Mixed Up Mommy
Living in Atlanta, loving travel and watching my son kick tuberous sclerosis complex's butt.
You Don't Know Jack
Posts about tuberous sclerosis written by quilterina.
MayoClinic
Tuberous sclerosis is often detected during infancy or childhood. Some people with tuberous sclerosis have such mild signs and symptoms that the condition isn't diagnosed until adulthood, or it goes undiagnosed. Others experience serious disabilities. Although there's no cure for tuberous sclerosis, treatments are being studied.
NHS
Tuberous sclerosis, also known as tuberous sclerosis complex, is a rare genetic condition that causes mainly non-cancerous (benign) tumours to develop in different parts of the body. The tumours most often affect the brain, skin, kidneys, heart, eyes and lungs.
NINDS
The name tuberous sclerosis comes from the characteristic tuber or potato-like nodules in the brain, which calcify with age and become hard or sclerotic. The disorder--once known as epiloia or Bourneville's disease--was first identified by a French physician more than 100 years ago. Many TSC patients show evidence of the disorder in the first year of life. However, clinical features can be subtle initially, and many signs and symptoms take years to develop. As a result, TSC can be unrecognized or misdiagnosed for years.
NORD
Tuberous sclerosis is a rare genetic multisystem disorder that is typically apparent shortly after birth. The disorder can cause a wide range of potential signs and symptoms and is associated with the formation of benign (non-cancerous) tumors in various organ systems of the body.
The Doctors Doctor
Tuberous sclerosis complex (TSC) is an autosomal dominant genetic disorder characterized by a variety of organ system changes. Its name is derived from the characteristic changes that occur in the brain, called tubers. Over time, these tuberous growths become hard and sclerotic and may calcify. Until recently, most of the proliferations and tumors associated with the disease were thought to be hamartomas. Recent molecular biological analysis has revealed that these are clonal processes and true neoplastic growths.
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