Search Results

LEARN About TSC Tuberous Sclerosis Complex (TSC) affects hundreds of individuals in New Zealand and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC, but with appropriate support most people with TSC can live fulfilling lives. #IAMTSC "What Is TSC?" PSA Play Video Facebook Twitter Pinterest Tumblr Copy Link Link Copied TSC affects everyone differently One of the reasons Tuberous Sclerosis is difficult to understand is because it is such a diverse condition. Every child is an individual and not every person affected by TSC will have all of the signs or symptoms. Symptoms of TSC are also seen in varying degrees in each child. Recent improvements in treatment of TSC and its symptoms (particularly in seizure control) mean that the outcome for babies born today is often better that in previous generations. There is currently no way to predict which individuals will be severely affected by the symptoms of TSC and which will be mildly affected. Lifelong surveillance and management of symptoms as they arise is very important. The signs and symptoms of Tuberous Sclerosis Complex The common features that are characteristic of TSC are listed below: Brain Many different types of non-cancerous growths (tumours or lesions) may occur in the brain. About 50% of people with TSC have an IQ in the normal range. Individuals with TSC can have clinical features such as epilepsy (seizures), learning disabilities, intellectual impairment, autism spectrum disorders and sleep disorders. There is a wide range of severity of these symptoms.The neuro-psychiatric aspects of TSC are referred to as TAND – Tuberous Sclerosis Associate Neuro-psychiatric disorders. Infantile spasms are a common and potentially catastrophic seizure type in babies with TSC which can be hard to identify. Infantile spasms should be considered a medical emergency and prompt diagnosis and treatment in critical. This video shows part of a cluster of infantile spasms. Go to http://www.tsalliance.org/infantilespasms for more information on infantile spasms. Useful links: Video of Dr Claire Spooner and Dr Melinda Nolan's TSC and Epilepsy Session at TSCNZ National Conference May 2023 Video of Dr Lisa Underwood's presentation on Managing TAND at the TSCNZ National Conference 2023 . Video of Neurology Session at the 2014 TSC Family Conference in Auckland Video of Lisa Underwood, TSCNZ committee member's presentation on Understanding and Diagnosing TSC Associated Neuro-psychiatric Disorders (TAND) at the 2015 Australian Tuberous Sclerosis Conference Skin Multiple white patches (hypopigmented macules) on the skin are often the first sign of TSC. Other skin rashes may develop with time, but none of these skin symptoms cause serious medical problems. Several New Zealanders are using Sirolimus cream to treat facial angiofibromas. Funding can be available through a prescribing doctor's application for NPPA funding . Consumers may have to pay a small compounding fee. Video of Tuberous Sclerosis and the Skin, including emerging treatments for facial angiofibromas from the 2014 TSC Family Conference in Auckland Heart Rhabdomyomas are growths that occur in the heart muscle. These often do not cause any medical problems and generally shrink with age. Very occasionally, surgery is required if the growth is blocking blood flow. Kidneys Cysts and growths can occur in the kidneys. The most common type of kidney (renal) growth is called an angiomyolipoma or AML. These can sometimes cause kidney problems and there is a slightly increased risk of kidney cancer in people with TSC. A very small number of people also have another renal condition, called polycystic kidney disease as well as TSC. Video of Dr Murray Leikis and Dr Leila Arnold's presentation on TSC and the Kidneys and Transitiion to Adult Services at the TSCNZ National Conference 2023 Video of Tuberous Sclerosis Complex and the Kidneys at 2014 TSC Family Conference in Auckland Lungs Cysts can occur in the lungs. This is called lymphangioleiomyomatosis (LAM) of the lung. LAM may not cause any problems or may cause shortness of breath requiring medical attention. LAM affects about 30% of women with TSC, and is seen only very rarely in men. Eyes Benign tumours called harmatomas can occur at the back of the eye (retina). These generally do not affect vision. Surveillance and Management of Tuberous Sclerosis Complex There is no cure yet for TSC, but the symptoms can be treated or managed. Regular surveillance to look for symptoms and early treatment are associated with better health and quality of life for people with TSC. In 2021, the International Tuberous Sclerosis Complex Consensus Group reviewed prevalence and specificity of TSC-associated clinical manifestations and updated the TSC criteria for diagnosis, surveillance and management published in 2013. You can read more about the diagnostic criteria and surveillance recommendations here at Tuberous Sclerosis Australia's website. For individuals who are not healthcare professionals, below is a brief summary of the consensus recommendations for monitoring individuals with TSC. The updated diagnostic criteria for TSC is available here. You can also get a printable pdf of both the diagnostic criteria and the surveillance and management guidelines by clicking here . View this talk on The Updated International TSC Surveillance and Management Guidelines by Dr Darcey Krueger at Tuberous Sclerosis Australia's event in 2021 for more information about surveillance and management of TSC. Genetics of Tuberous Sclerosis Complex TSC is genetic but not necessarily inherited from a parent. In about 70% of cases TSC has come as the result of a new genetic mutation, and no one else in the family is affected. It may be important for parents or siblings to find out whether they also have the TSC gene because anyone with the gene has a 1 in 2 chance of passing it on to their children. Genetic counselling is recommended for all families with TSC. In New Zealand, genetic counselling is provided by the Genetic Health Service . Video of Dr Juliet Taylor's TSC and Genetics at the TSCNZ National Conference 2023 This video from the 2015 Australian Tuberous Sclerosis Conference provides a thorough explanation of the genetics of TSC and reproductive options available. Need to know more? We recommend these websites for more in-depth information about TSC symptoms and treatments: Tuberous Sclerosis Australia Tuberous Sclerosis Alliance (USA) Tuberous Sclerosis Association (UK) Tuberous Sclerosis Complex International Donate Online DONATE Call us for Questions +6421 154 7017 Volunteer Your Time We'd love to hear from you and suggest effective ways you can assist our organisation! info@tsc.org.nz

empower Ensuring our community are informed, connected & supported. WHAT IS Tuberous Sclerosis Complex? Tuberous Sclerosis Complex (TSC) affects hundreds of individuals in New Zealand and thousands more carers, families and friends who live with the impact of the disease. TSC tumours can grow in any organ of the body, commonly affecting the brain, skin, heart, lungs and kidneys. TSC can cause epilepsy, developmental delay and autism. There is no known cure for TSC, but with appropriate support most people with TSC can live fulfilling lives. Read more Our Mission To ensure the New Zealand Tuberous Sclerosis Complex community are informed, connected and supported. Read more latest news Christchurch Coffee Catch-up Oct 11 TSCNZ President Helen Willacy will be at Terra Viva Cafe, 242 Roydvale Avenue, Burnside, Christchurch from 10:30am on Saturday 11th... Sep 17 Congratulations Helen! TSCNZ President, Helen, was nominated for a Rare Disorders 25th Anniversary award. Awards were presented at a special ceremony at... Apr 25 Donate Online DONATE Call us for Questions +6421 154 7017 Volunteer Your Time We'd love to hear from you and suggest effective ways you can assist our organisation! info@tsc.org.nz Mailing list

SUPPOrT US DONATE or JOIN TODAY! BECOME A TSCNZ MEMBER! In our bid to fulfil our mission to inform, connect and support the TSC community in New Zealand, we invite you to become a financial member of Tuberous Sclerosis Complex NZ! For an annual Donation, You'll support the work of our organisation to help in the following ways: Provide email and phone support for TSC affected individuals, families and healthcare professionals Hold conferences and seminars for families and healthcare professionals Advocate to improve access to best practice care Maintain an up-to-date website of TSC related information and resources Publish an email newsletter Host a Facebook page at www.facebook.com/TSCNZ Support TSC research activity in NZ TSC HEROES Fundraising for TSCNZ? You can set up a page on Givealittle here: https://givealittle.co.nz/org/tscnz/fundraise Download our fundraising information sheet to print or send out. Score a free T-shirt by signing up to be a TSCNZ Hero Fundraiser! TSCNZ Heroes use their talents or put their bodies to the test by completing a fitness challenge and raising money for people living with TSC. Whether you choose to run, walk, cycle, swim, bake or make sushi, YOU can make a difference. Read about some of our TSC Heroes: Tom Bear The Willacys Frances & Michael Nic You may choose to do your own thing or you could sign up to join an official event like Round the Bays. Whatever you choose we are here to help and support your efforts. To sign up today you can either visit givealittle to register as an online fundraiser or fill in the form below and we will be in touch. Please let us know what size TSC Heroes t-shirt or singlet to send you as our way to thank you for signing up to be a hero for people living with TSC. You are also very welcome to purchase some merch. Go to tscnz.digitees.co.nz to check out the options. 10% of every sale goes towards fundraising for TSCNZ. These T-shirts are great for the everyday heroes living with TSC or friends and family who would like to show their support. There are also drink bottles, a cap and even a gorgeous baby onesie! Send Thank you! We will get back to you soon. Donations of over $5 are eligible for a New Zealand charitable giving tax credit. VOLUNTEER! Tuberous Sclerosis Complex New Zealand is primarily run by volunteers and there are many opportunities to get involved. Most work is done from home and meetings are by teleconference, so geography is no barrier. Perhaps you could contribute through one of these ongoing volunteering roles: Management Committee members: The committee meets bi-monthly usually by video conference and directs the activities of TSCNZ. Local activities: Organising events locally to connect with TSC families in your area. Fundraising: Every effort, big or small, helps. We can support you through provision of posters, printed material, receipting for tax purposes and ideas to get you started. Send Thank you! We will get back to you soon. Bequests No matter how small, leaving something to TSCNZ will really make a difference for New Zealanders living with TSC. When you include a bequest in your will, you have the option of leaving a specific amount, an item or a percentage of your estate to TSCNZ. It is important to consult your solicitor, Guardian Trust or Public Trust office for advice in drawing up your will. Bequests for 'General Purposes' allow us to use these gifts where most needed. A thoughtful way to honour someone whose life has been affected by TSC is to ask family and friends to make a donation in their memory, or in lieu of flowers. These generous, encouraging donations help fund our work for all those who live with TSC. To find out how to go about this, or if you would like more information about making a donation or bequest to TSCNZ, please email info@tsc.org.nz or call us on 021 154 7017. In Memory of a loved one Donate TSC-Heroes Donate Online DONATE Call us for Questions +64 21 154 7017 Volunteer Your Time We'd love to hear from you and suggest effective ways you can assist our organisation! info@tsc.org.nz

TSCNZ President Helen Willacy will be at Terra Viva Cafe, 242 Roydvale Avenue, Burnside, Christchurch from 10:30am on Saturday 11th October and would love to meet up with Canterbury based individuals and families living with TSC for a coffee and a chat. The management committee are looking at planning our next national conference in Christchurch in October 2025 so we would really appreciate some ideas about venues, speakers, funders and any other local knowledge. Please email info@tsc.org.nz if you are planning to come along.

TSCNZ President, Helen, was nominated for a Rare Disorders 25th Anniversary award. Awards were presented at a special ceremony at Government House by the Governer General, Her Excellency The Rt Hon Dame Cindy Kiro. Helen's nomination recognised her outstanding contributions to improving the health and wellbeing of people living with rare disorders through her role at TSCNZ. Read more about the event on Rare Disorders NZ's website and Faceboo k. Learn about Helen's TSC journey on our new webpage of TSC Stories .

Tom, our wonderful TSCNZ Secretary is climbing Mt Maling [height 1825 metres] in the South Island to raise money for TSC. We're incredibly grateful to Tom for this fundraising and all the amazing voluntary work he does for us. Please join us in wishing him and his sons all the best for the climb! https://givealittle.co.nz/fundraiser/support-tom-in-his-climb-for-tuberous-sclerosis Donations help us continue to: - Provide email and phone support for TSC families - Maintain the TSCNZ website - Produce and distribute TSC Resources - Hold conferences and seminars - Advocate with Rare Disorders NZ  to improve access to best practice care