Q: My child is 6 and has had a kidney ultrasound at 1 year and 4 years, both of which were clear. Does he need one final scan?
A: He should have repeat scans up to his mid 30s. The kidney retains its growth potential until mid-adult life so there is a continuing risk. However if nothing is found, these can be done less frequently. Perhaps every 3 years until mid teens and then 5-yearly (But these are “best guesses”).

Q: Can AMLs start growing at any age?
A: Yes, they can, but AMLs tend to stop growing by the age of 35 as this is when the kidney itself stops growing. The important thing to know about an AML is what size is it and if it gets any bigger over time. You can only know that by having an ultrasound to see if one is there and if there is, having another one to compare the size and see how fast it has grown.

Q: Do you recommend a kidney ultrasound when TSC is diagnosed (whether in infancy, as a teenager or as an adult)?
A: Yes, a kidney ultrasound should always be performed where there is a diagnosis or suspicion of TSC, along with a blood test, blood pressure test and physical examination of the abdomen.

Q: Is extra kidney monitoring required for polycystic kidney disease and AMLs?
A: It is very important to measure blood pressure and kidney function (with a blood test) and doctors can feel your tummy to feel the size of the kidneys and cysts. Ultrasounds are recommended to rule out PKD and are only needed annually if the kidney specialist thinks they are needed. If you have PDK you should be referred to a kidney specialist.

Q: What if the Doctors are unsure what is a cyst and what is an AML?
A: This can happen, as the cysts can be so small. Doctors will monitor their size but also importantly the blood pressure and kidney function.

Q: What can cause renal pain?
A: Bleeding and stretching of the kidney capsule.

Q: Do you need an ECG prior to any surgery if you have a general anaestethic?
A: Yes, at least once. There is a rare cardiac condition called Wolff Parkinson White syndrome, so make sure your anaesthetist knows that you have TSC. If the condition does not show up in your first ECG then it will not be needed again unless you have another existing cardiac condition.

Recruitment to the Everolimus AML clinical trial has now been extended to June 2010. By then we need to reach the worldwide target of 99 patients for the trial to give us the answers we need. With 21 patients by February, that is a tall order and we need your help. There is huge interest in the TSC community in a drug which will treat the condition, the researchers are poised, but the trial cannot proceed without enough participants.

So..if you have an AML of at least 3cm in longest diameter and want to find out more please email us or ring 01273 696 955 extension 3541.

The Everolimus SEGA clinical trial is also recruiting 99 worldwide from an even smaller population-people with TSC and an enlarging SEGA at least 1cm in longest diameter. Again, contact us or ring 01273 696 955 extension 3541.

The clock is ticking; let’s really have something to show for those 3 extra months.

Following last years sucessful get together and positive feedback from our members we will be returning to the LTCAS for this years event. We have moved the date slightly so as not to clash with Haloween. This years event will be held on Saturday the 6th of November 2010.

The venue is the Long Term Conditions Alliance Hub (LTCAS), Venelaw Building, 349 Bath Street, Glasgow. Website www.ltcas.org.uk 

The programme and booking forms will be sent out to our members closer to the time.

These days have proved very popular in the past and thanks to external funding we will be holding another subsidised member event.

The venue: Center parcs Longleat Forest Wiltshire

The Date: Saturday the 26.6.10

There will be an opportunity to meet up with others over a buffet and disco but also access to enjoy the parc indoor swimming pool for the entire day. TSC Advisers will also be on hand to answer any queries you may have. Members will be sent full details and booking forms with their next edition of the Scan magazine (due out mid April). If you are not a member of the TSA but would like to come,  please use the contact form on the website to contact Diane who can send you the relevent information.

We look forward to seeing you there!

We plan to repeat the popular workshop theme to give you the opportunity to chose which workshops you would like to attend. We also have the support of the Mobile creche company to keep everyone is safe and happy. Activities for older children will also be provided.

A programme and full details will be sent to our members closer to the time.

We look forward to seeing you there!

British 10th Anniversary London Run 10k Run (London) Sunday 11 July 2010 - 6 PLACES AVAILABLE

Videos and presentations presented by the Keynote Speakers are now available to view or download.

Read more

So, with our ‘Write Away’ campaign we ask you to please email a personal letter to your family and friends requesting support for the Tuberous Sclerosis Association. Funds collected will assist the TSA in funding vital family support services and TSC research projects.

Write a short personal account of your child or yourself , ‘living with TSC’, and attach a photo. Please request a donation to the TSA in support of our work. Direct them to this website www.tuberous-sclerosis.org and tell them that to donate online they just click "donate". All donations will be acknowledged in the usual way.

‘Helping children with tumours'

‘Helping all those ‘touched’ by TSC’

With huge thanks from the TSA.