Adult Life

This section contains information about Tuberous Sclerosis Complex especially for newly diagnosed teenagers and adults.

There are a small number of specialist NHS TSC clinics in the country and also a number of doctors with a particular interest in the condition. Your doctor can refer you to one of these specialists or seek their advice about particular problems.

If you live in the UK and would like more information after reading this page, or you simply wish to talk to someone, contact one of our TSC Advisers Contact us

Because the effects of TSC are variable, the amount of support people may need is also variable. Some individuals with TSC don’t need any additional help while others do.

The TSA is available to help. TSA Advisers can provide you with information, advice and support on the telephone, by email and through home visits. They can liaise with the professionals and organisations involved in your care to help you get the best service.


Epilepsy

Epilepsy is very common in TSC and it can also be diagnosed when a teenager or adult. Click HERE for our leaflet on Epilepsy. There are many different types of seizures some can be very subtle. Different types of seizures can develop over time. Filming a seizure on a mobile phone and keeping a seizure diary can help the clinicians caring for you. It is not always possible to control all the seizures that a teenager or adult with TSC has. Click  There is a lot of advice from epilepsy organisations about epilepsy, contact your TSC Adviser for more information on these groups.  

Kidneys

Although many kidney abnormalities in TSC cause no problems, some can have an effect on the proper functioning of the kidney.   The most common kidney problems in people with TSC are angiomyolipomas (AMLs). These occur in up to 80% of people with TSC. Regular monitoring by a consultant nephrologist is essential to the care of people with TSC. Use the TSC Guidelines (which include recommendations for monitoring) to develop an individualised monitoring and review plan. AMLs begin to grow in childhood but may not cause a problem until early adulthood.  Once identified AMLs require monitoring. 

People with TSC may also have simple cysts in one or both kidneys.  Usually these cause no problems. A small number (2%) of people with TSC also have polycystic kidneys (PKD), which can cause high blood pressure and impairment of kidney function. It is important that people with TSC and PKD are under the care of a kidney specialist and centre. 

Lungs

Lymphangioleiomyomatosis (LAM) is a lung complication of TSC caused by an overgrowth of cells in the airways, blood vessels and lymph vessels.  LAM is more common in women than in men and so the female hormone oestrogen is thought to play a part in its development so it occurs between puberty and the menopause.  LAM occurs in  approximately 30% of women with TSC but only causes breathing problems in a small number of women. Women with TSC and LAM, who are considering pregnancy should discuss this with their doctor first.  Recommendations from TSC experts include a high resolution CT scan followed closely by a Respiratory Consultant familiar with TSC /LAM.  Detailed guidelines on LAM screening, monitoring and treatment exist. 

For more information on LAM and TS click HERE

Planning a family

A new technique is now available called pre-implantation genetic diagnosis (PGD for short). Couples having this treatment conceive using IVF (in vitro fertilisation also known as test tube babies). The embryos are tested for TSC before being placed in the mother with only unaffected embryos being used. It is a relatively new technique so is not available everywhere and some or all of the costs may need to be paid for privately. Other options may be egg or sperm donation. If you are considering starting a family and would like advice ask your doctor to refer you to your regional genetics centre. DOWNLOAD a copy of our leaflet on genetics and TSC For information on PGD please visit www.hfea.gov.uk  For genetic counselling please visit www.nhs.uk For a list of regional genetic clinics and an array of patient information please visit www.geneticalliance.org.uk

Pregnancy and TSC

Many women with TSC have a normal, healthy pregnancy but there are some potential health complications to be aware of. Women with kidney and lung problems may find that these conditions worsen during pregnancy so it is important to talk to your doctor before starting a family. Some anti-epilepsy drugs (AEDs) can affect the development of the unborn baby and some are not recommended if you plan to breast feed. Talk to your doctor before getting pregnant and s/he can change your AEDs to drugs that are safer for the baby. If your pregnancy is unplanned don’t stop taking your AEDs suddenly but talk to your doctor first.
For more information please contact your local TSC Adviser
Some TSC related problems Some people with TSC who have completely normal intellectual abilities find they have problems with some specific areas. 

Memory

Many people with TSC have memory-related problems. Difficulties with memory may be related to epilepsy, side effects of medication or underlying brain growths. Stress and anxiety can also affect memory.

Sleep problems

People with TSC may wake more often in the night and experience less efficient sleep.

Mood swings

People with TSC are more likely to experience mood swings including aggression and self harm.

Social skills

There are high rates of autism and Asperger’s syndrome in TSC. Some people with TSC find it difficult making and keeping friends, even if they may not have autism or Asperger’s.

Mood & Anxiety Disorders

At present, the research evidence is somewhat conflicting regarding the rates and nature of diagnosed mood and anxiety disorders in TSC.  The majority of data do, however, suggest that the rates of mood and anxiety disorders are significantly increased in normally intelligent adults with TSC.

Work

Some people with TSC may find it difficult to get and keep work. This is sometimes because of problems with epilepsy, poor health or mental health problems. In the UK it is unlawful for employers to discriminate against someone because of their disability.

The Disability Law Service (DLS) provides free advice in relation to disability discrimination, community care, employment and welfare benefits. The DLS can do this through its telephone advice sessions or by post or e-mail.

The Disability Rights UK also have a helpful and free factsheet (F24) on "Careers and Work for Disabled People" HERE

Disability Law Service visit: www.dls.org.uk

Disability Rights UK visit:  www.disabilityrightsuk.org

www.focusondisability.org.uk/law-centre.html

- has info/links to law centres in the 4 nations - and includes Disability Law Service.

(The Disability Law Service's states - our programme of national development is a five-year project to improve the access to high quality specialist legal advice for disabled people, their families and carers - across every region of England)


Independent Living

 

Travel

In the UK many adults with TSC-related conditions (such as epilepsy, autism or other disabilities) may be eligible for free or discounted travel. To find out if you are eligible, you will need to contact your local council.

Insurance

People with medical conditions like TSC sometimes find it difficult to get reasonably priced travel and life insurance and can be refused cover. If you are having problems with finding travel or life insurance, you may find the following guides helpful.

GeneticAlliance.org.uk

Genetic Alliance  - information on travel insurance

The Genetic Alliance and the TSA recommend having a look around at various companies and policies before committing to an insurance policy.


The Outlook Group

The TSA Outlook Group supports those adults with TSC who are relatively mildly affected and interested in contacting and developing friendships with other TSC adults. Outlook members may be in employment, working in a variety of everyday jobs and professional careers. Outlook provides an ‘extended sense of community’, confidence, support and friendships. It gives people the chance to speak to someone else who understands what living with TSC is all about.

To contact an Outlook member for more information on this group and the event please contact andra.campbell@tuberous-sclerosis.org