There is not a cure for TSC yet. TSC is a condition that a person is born with and they have it for their entire life. If someone is living with TSC, they might need lots of looking after or not at all. It depends on how much TSC affects them.
We now know lots about TSC and we are always learning more. There are lots of medicines and ways to help people who live with the condition feel better.
The TSA has always helped people living with TSC and their families. The TSA also works very hard to try and find out why TSC happens and what we can do to make people who live with TSC feel better. The TSA is very proud of its work, with the hope to provide help for today and a cure for tomorrow.
Advice for doctors on how to look after people who live with TSC
Doctors who know lots about looking after people who live with TSC wrote a booklet about the condition. The doctors did this to help other doctors look after people who are living with TSC. This way, people living with TSC can be looked after really well.
The booklet was a big step for looking after people living with TSC in the UK.
The TSA wrote the more important points from the doctor’s booklet into their own guide. The guide was given to doctors all around the UK. The TSA hope that people living with the condition who read their guide will use it to better understand how they will be looked after by doctors.
There is also an ‘easy read’ version of the TSA’s book on being looked after by doctors. The ‘easy read’ version is easy to understand.
Special hospitals for people who live with TSC
There are special hospitals for people who live with TSC, called ‘TSC clinics’. The doctors in TSC clinics know lots about TSC. If a doctor has told someone that they have TSC, the person might be asked to visit one of these TSC clinics.
Ways to make people who live with TSC feel better
There are treatments and medicines that can help people living with TSC feel better. TSC affects everyone living with the condition very differently. This means that the medicines and treatments someone living with TSC might get can be very different to another person who also has the condition.
A person living with TSC might be given medicine or treatment to help with lots of different things. They might include:
- To help make lumps and bumps in the body smaller or stop lumps from moving to other parts of the body
- To help someone who has seizures or ‘fits’ because of their TSC have less of them
- To help make marks on the skin smaller or stop them from spreading
- To help people living with TSC who aren’t thinking or acting like they normally would feel better
Why having check-ups with a doctor is important if you live with TSC
If you have TSC, lumps grow in different parts of your body that wouldn’t normally be there. Some places where the lumps might grow are the brain, eyes, heart and skin.
TSC might make you poorly because of the lumps that grow in your body because of it. The lumps might mean you have seizures or ‘fits’, feel or act differently or have kidney problems.
It is important that people living with TSC have regular check-ups with the doctor so they can see what the lumps and bumps on the person’s body are doing.
If you are living with TSC, you might get these scans or check-ups:
- A scan of your head to check for lumps
- A scan of your chest and belly to check for lumps
- A check of your eyes to see how healthy they are
- A check of your skin to see how healthy it is
- A check of how your body is made (your genes) to check if you have TSC
- A check of how you are thinking and feeling, to see if it is different to usual
The TSA will work very hard to keep supporting people who live with TSC. The TSA will also keep working hard to find out why TSC happens and to find new medicines for the condition.
If you want to know more about medicines and check-ups for TSC, you might want to talk to our support team.