Individuals & Families

Parents / Caregivers

Living with Tuberous Sclerosis Complex

Tuberous sclerosis complex (TSC) manifests itself in many different ways, but one factor individuals with TSC have in common is they must live with the disorder their entire lives. As children, it means their parents must face issues regarding education, health insurance and socialization, among others.

As young adults, some of those affected by TSC may have to deal with a transition to independent living and employment while others may deal with dating issues and reproductive concerns. Throughout their lives, those affected with TSC must live with a permanent medical condition.

Accepting the Diagnosis

The diagnosis of tuberous sclerosis complex (TSC) may be made at any point in an individual’s life, young or old. A newborn infant with white spots on her skin may be diagnosed with TSC when she has her first seizure and the tubers in the brain are seen on magnetic resonance imaging (MRI). A gifted and talented 5-year-old with facial angiofibromas may be diagnosed with TSC when his caregiver takes him to see a dermatologist because of the “rash” on his face. An adult may be diagnosed with TSC after his child is diagnosed with the disease.

No matter when the diagnosis comes, it can be difficult to understand and accept, and it can be devastating for both the individual and the family.

Telling Your Child He/She Has TSC

The right time to tell your child he or she has tuberous sclerosis complex will depend on family dynamics, the child’s abilities and maturity level, and the clinical manifestations of TSC seen in the child. In an informal survey of 10 families with children with TSC, each family had their own unique approach to telling their child about TSC. Most families indicated the best time to tell children was when they were very young so they grow up knowing they have TSC. Some parents regretted not telling their children when they were younger because they felt they could have spared their child from being fearful of the doctor’s appointments and the unknowns about their condition. Several individuals expressed the belief that telling a teen they have TSC was not the thing to do. For instance, it can be devastating for a teenager to learn they have a genetic condition at a time when they are already suffering from low self-esteem.

Several parents contended that answering the child’s questions in a simple and straightforward manner was the best approach. Children may be happy with just knowing a name exists for their condition, which is why they have to go to the doctor so often. Explaining that it is important to get a “picture” of their brain, and the only way to do this is with either an MRI or a CT scan, may help them to understand why these tests are being done.

One parent indicated it helped to talk to her child about other individuals with TSC so the child began to understand there are many forms the condition can take. The child would ask, “What kind of TSC does he have?” when the mother referred to an individual she knew. It provided an opportunity for the mother to tell the child about this individual’s clinical manifestations of TSC, and then tell the child whether they do or do not have these same manifestations. Introducing a child with TSC to other individuals with the condition can also be extremely beneficial. It helps a child feel that they are not alone with their condition when they learn others are living and coping with TSC.

Telling Siblings About TSC

Research has shown it is important not only to inform the siblings about the diagnosis of their brother or sister but also to make sure their needs are being met. It can be stressful and difficult for them to comprehend what is happening to their sibling if the child has frequent hospitalizations and/or visits to doctors. A young child may be frightened that he or she caused their sibling to get sick, or that they themselves will get sick and have to go to the hospital. They may also feel neglected if the child with TSC has chronic health needs and requires a lot of time and attention from the parents.

It is just as important for parents to be honest and straightforward with the siblings as with their child with TSC. Children need to understand that they cannot “catch” tuberous sclerosis complex from their sibling, and that they are not responsible for their sibling’s condition. If they are brought into the process and understand their sibling has special needs, they will accept from a very early age the challenges placed on them and their family. This is not to say that it will always be a smooth road; there will be times when the siblings feel neglected, angry or concerned. It is during these times when it will be important for the parent to give some special attention to the siblings so their concerns and needs can be addressed.

Advocating for the Person with TSC

Advocacy means a person makes an informed decision about a matter and then takes responsibility for bringing about the change necessary to make that choice a reality. Some ideas to consider when advocating for someone with TSC:

  • Be respectful but firm with your needs.
  • Treat the doctor/hospital staff/school staff the way you want to be treated.
  • Be persistent and ask for clarification.

While most agencies must respond to requests within a certain time limit, be sure to ask for clarification if you don’t understand the process or need more information.

  • Know your rights.
  • Keep good records.
  • Request written confirmation of kept promises, timeline or denial.

Advocacy is an act of directly representing yourself and/or your child in a way that will be perceived as assertive and not passive or aggressive. In the past, it has not been customary for people with disabilities to challenge the power of authorities, so it can be alien for some to  assert rights and needs. However, all people have the right to self-determination, even if it goes against professional judgment. Ultimately, each person is the expert in what is needed and useful, so go ahead and ask for it.

Advocacy Resources/Publications