Info for Patients

Information for Patients:

For information about Support Services (including relevant forms) provided to patients & partners & their families by the Thalassaemia Society of NSW ... please click here 

For useful articles & information, see below:

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ThaliMe - Mobile App and Community

The first mobile app that connects you to other Thalassemia patients and families who know what you’re going through. Easily access the information, advice and health tracking tools you need to manage your health. Get support from others just like you. Click for more info and here for  video demonstration.

TIF - Thalassaemia Patients Connect Community

The Thalassaemia Patients Connect project, launched by the Thalassaemia International Federation (TIF), provides a shared communication space, giving individual patients and patient associations worldwide the opportunity to interact, ask for and share information with each other regarding thalassaemia.   Get More Info

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Medical Advancements in Treatment:

Scientists discover way to produce unlimited blood supply: New method to produce blood in a laboratory is more costly but could aid in shortages of rare blood types.

Immortal Stem Cells Let Scientists Create Artifical Blood: Researchers have developed a line immortal stem cells that allow them to generate an unlimited supply of artificial red blood cells on demand.

Teenager's sickle cell reversed with world-first therapy: BBC News, March 2017: A French teenager's sickle cell disease has been reversed using a pioneering treatment to change his DNA. The world-first procedure at Necker Children's Hospital in Paris offers hope to millions of people with the blood disorder.

Genetic discovery could lead to cure for common blood diseases: An ABC Radio Report about a discovery by UNSW Researchers. 

The Stem Cell Revolution: Discovered nearly thirty years ago in 1988, stem cell technology has failed to transform the field of regenerative medicine — until no­­w

CRISPR Therapeutics plans its first clinical Trial for Genetic Disease

First human CRISPR study in the US could begin soon

DNA surgery on embryos removes diseasePrecise "chemical surgery" has been performed on human embryos to remove disease in a world first by Chinese researchers.

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Useful Health Articles:

Living with Thalassaemia or Sickle Cell Anaemia can be difficult, but several lifestyle and treament approaches can help. 

Living with Thalssaemia:  Short bullet point and helpful overview from TASCA

A Guide to living with thalassaemia: Extensive information booklet from CAF (Cooleys Anemia Foundation) 

Iron: Is too much harmful?Chronic iron overload occurs when the body’s limited iron storage capacities are exceeded. Because there is no natural mechanism to remove excess iron from the body, iron builds up – first in the liver, then in hormonal organs like the thyroid and pituitary glands, and eventually in the heart. The major cause of chronic iron overload is regular blood transfusions. Iron Overload Infographic

What to Expect when you go for an MRI for heart or liver iron: An American publication about Magnetic Resonance Imagaing (MRI) for assessing amounts of iron in our organs.

Stress Less Tips: is an initiative of WayAhead - Mental Health Association NSW. 10 easy-to-do 'Tips to Stress Less' are developed each year to help support mental health and good wellbeing.

Managing Fatigue:  A handy booklet from the members of the IDFA (Immune Deficiencies Foundation of Australia). A great organisaiton with whom we work. Also visit: IDFA website 

Sickle Cell Books:  13 books every sicklce cell warrior should read.

Managing your health with thalassaemia: Routine investigations in the management of thalassaemia - an overview from UK Thalassaemia Society (UKTS)

Following your Treatments - Pays Off! & Don't Wait for your heart to tell you about Iron  .. CAF Health Messages - For more Health Reminders and other Health Information visit CAF website.


Get Connected - Get Support

Facebook:

https://www.facebook.com/thalnsw/

https://www.facebook.com/Thalassaemia-Sickle-Cell-Society-of-Australia-198157430216491/

https://www.facebook.com/sicklecellsupportgroupaustralia/

https://www.facebook.com/thalassaemiapatients/   

Forums:

http://thalassaemiapatientsconnect.weebly.com/discussion-board-forum.html 

http://www.thalassemiapatientsandfriends.com/ 

Other Society Websites:

https://tascsa.net.au/ 

http://www.thalassaemia.org.cy/

http://thalassaemiapatientsconnect.weebly.com/ 


Useful Support Organisations for Patients:

Immune Deficiencies Support
Immune Deficiencies Foundation of Australia provides information, & Support for peoplw who have Primary Immune Deficiencies (gentic) or Secondary (cuased by transplantation, disease or treatment). Visit: IDFA website

Rare Diseases Support
Rare Voices Australia, the national alliance of people living with a rare disease, will provide a unified voice to improve the lives of all Australians affected by rare diseases. Visit: Rare Voices Australia 

Hepatitis C
For information & resources visit: Hepatitis NSW website
Hep C Helpline (02) 9332 1599 or 1800 803 990 for all other callers

Diabetes
For information & resources visit:
Diabetes NSW & ACT

Refugee Health

The NSW Refugee Health Service assists both refugee families and health practitioners. It provides free health assessment for recently arrived refugees through clinics run by a medical practitioner, nurse and with professional health care interpreters. There are also refugee paediatric clinics at Liverpool, Westmead and Sydney Children's hospitals. The Health Assessment for Refugee Kids (HARK) clinic is located at Westmead Hospital.

NSW Service for the Treatment and Rehabilitation of Trauma and Torture Survivors (STARTTS) provides mental health programs and support.

Way Ahead
Mental Health Assocation NSW.  For a wide range of information & resources & links to support organisaitons. Visit: Way Ahead and see Stress Less Tips

headspace
National Youth mental health foundation for the wellbeing of young australians (12-25 yrs).  
For information & resources visit: headspace australia

BeyondBlue - NewAccess Support

The NewAccess program provides support for people living with mild to moderate stress, anxiety or depression. It is free, confidential and available to anyone over 18 years of age. The program is aimed at helping people tackle day-to-day pressures using practical techniques and providing skills that equip you for life. NewAccess is a free service that provides support in the form of a coach - who will guide you in setting practical goals that will get you back on track. Visit: NewAccess 

Related Pages:  Patient Support  -  Personal Stories   -   Resources

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