On Behalf of the Blood fusion Australia Crew we would like to wish one and all a Holiday filled with happiness, and always may your favourite dreams come true.
For 2007 may it be filled with great health, good fortune and love. 2007 is going to be a year filled with much promise and we can't wait to share it all with you.
FUSION GREETINGS
Young Shay Christo - Son of Bill (Captain Fusion) turns 5 today 20-11-06
BFA members has an exciting mix of patients with blood transfusion dependant disorders like myself, and parents with children of similar disorders. We also have family members like aunties, husbands, etc who have a strong interest and desire in playing a supporting role and be pro-active in creating a better world for all.
Also we have a Fusion KIDZ KLUB, which consists of our little ones. Well today my little man turned 5, and he is is superhero crazy. Batman, Superman, Spiderman, he has all the dress up costumes, and we all just need to look out.
So no matter who you are, even how old you are, join this blog, pledge your support to Blood Fusion Australia, and help us grow.
Contact Bill Christo a1rad@netexpress.com.au
or bloodfusionaustralia@gmail.com
Idiopathic Thrombocytopenic Purpura(ITP) is a bleeding disorder which the blood does not clot when it should. The bleeding is due to the low number of platelets. Platelets are the blood cells that help the blood to clot.
There are two types of ITP: Acute ITP and Chronic ITP
Acute ITP mainly occurs in children both girls and boys and is the most common type it occurs following an infection cause dby virus and goes away on its own after a couple of weeks or months and does not return. In this case treatment may not be required.
Chronic ITP generally affects adults only, however it can affect teenagers and sometimes younger children. This ITP lasts a lot longerup to six months and sometimes requires treatment depending upon severity of the bleeding symptoms. It is more common in women than men.
Treatment if required can include intravenous immunoglobin, intravenous anti-Rh (D) and splenectomy. No evidence indicates however that any of these treatments and/or others will reduce bleeding complicaions or mortality from ITP. New treatments and oral medications are in developmental stages.
For further information
Blood Platelet Levels Significantly Increased with Eltrombopag
Idiopathic Thrombocytopenic Purpura
Fact sheet ITP
For those that have Sickle Cell Anemia life can for most people result in a life of severe pain, anemia and a low immune system. Not to mention the damage that sickling crisis can do to major organs. Treatments range from intravenous fluids, blood transfusion, hydroxyurea and pain medications. The only known cure is Bone marrow transplant which are not always successful.
Scientists are always researching, developing, discovering and trialing new ways of better treating or curing a disease. In the following case there is no exception. A new non-toxic drug developed by Xechem pharmaceuticals of Nigeria, 'NICOSANtm/HEMOXINtm' was granted orphan status back in May 2006 by the US FDA. This new drug is non toxic and promising for those that are afflicted by Sickle cell Anemia a new and safe form of treatment.
The drug is composed from the extracts of plants found in Nigeria. There are no adverse side affects to any parts of the body. This drug drastically reduces the degree of sickle cell formation and the frequency sickle cell crises. The success of the clinical trials held, suggest that this drug is safe and is capable of having the desired results for the management of sickle cell anemia.
For further information please go to the following sites:
Method of Treating Sickle Cell Disease With 5-HMF Compound Licensed from VCU
The Development of NICOSANtm/HEMOXINtm. A drug for the managment of Sickle Cell Disease.
There have been some interesting developments concerning Sickle Cell anaemia in the US. They are moving foward with awareness campaigns and research in the fight for the cure of this blood disorder. Follow this link for further information, SICKLE NEWS.
Interesting FACT: Did you know that approximately 16 million people worldwide are believed to be afflicted with Sickle Cell Anaemia
Register for this WEBCAST as it will discuss the efficacy of available iron chelators Guest Speaker Dr. Vasilis Berdoukas
Register
November 14th, 11am (GMT), 6pm Bangkok ,
November 14th, 9pm Brisbane, 10pm Sydney, 10pm Canberra, 10pm Melbourne, 10pm Hobart, 9.30pm Adelaide, 7pm Perth, 8.30pm Darwin, Auckland New Zealand Midnight between Nov 14th & Nov 15th
Register
November 15th, 4pm (GMT), 8pm Dubai ,
November 16th, 2am Brisbane, 3am Sydney, 3am Canberra, 3am Melbourne, 3am Hobart, 2.30am Adelaide, Midnight Nov 15th & Nov 16th Perth, 1.30am Darwin, 5am Aucklland New Zealand
Register
November 16th, 5pm (GMT), 5pm London, November 17th, 4am Sydney
November 17th, 3am Brisbane, 4am Sydney, 4am Canberra, 4am Melbourne, 4am Hobart, 3.30am Adelaide, 1 am Perth, 2.30am Darwin, 6am Aucklland New Zealand
Australian Red Cross Blood services have very stringent guidelines that are followed for prospective volunteer blood donors. The many rules and regulations put in place are to ensure safe blood for those that require it.
Blood Donors must be aged between 16 and 70 years in most states and Territories of Australia, in Tasmania and NT they must be 18 to 70 years.
Personal interviews and detailed questionares about the donors health, previous and current health conditions are completed everytime a volunteer blood donor donates. Volunteer donors can only donate if they meet these guidlines.
If the blood donors meet these guidelines their blood sample is then tested for the following, HIV, hepatitis, syphilis and other serious communicable diseases.
For Further information on donating blood please click on the following link Australian Red Cross Blood Services
In the 21st Century blood transfusions are considered to be a safe life saving procedures for those that require it. Blood transfusions are used to stabilise a condition or to save the lives of those who have be in an accident or need surgery.
People with cancer, haemophillia, leukaemia, sickle cell, thalassaemia, Diamond Blackfan and other related disorders also require blood transfusions. It is estimated that more than one million donations of blood are required every year in Australia to maintain blood supplies.
Whole blood is rarely used except in cases of sudden and severe blood loss. Whole blood is seperated into individual components and used for different purposes.
RED CELLS are required for treating anaemias that can't be helped by other medical treatments and for giving 'top ups' to people after surgery or childbirth.
PLATELETS are given to people with cancer and luekaemia after they have had chemo or a bone marrow transplant.
PLASMA is given to people whose blood doesn't clot properly, such as can occur if someone has had anticoagulan treatment or suffers from liver disease or haemophilia.
I was reading an interesting article today in the "Sydney Morning Herald by Belinda Kontominas dated October 13, 2006", about a young couple and their very sick child diagnosed with cancer. The family recieves a Carers allowance and rental assistance each fortnight but also applied for a means tested carers payment only to be rejected from Centerlink because their child "was not sick enough". It seems that the medical condition of the child was not severe enough to be eligible for this payment. This is not a rare case. It is important to be informed following are some useful links.
So, What is the criteria? What are the facts? Following are some useful links about Centerlink Carers allowance and Carers payment .
Centerlink
National Welfare Rights Network
The Pharmaceutical Benefits Advisory Committee has approved the oral iron chelator Exjade (deferasirox) to be listed on the Pharmaceutical Benefits scheme. Those that are blood transfusion dependant this is a huge step foward in the their treatment regime. For further information click on the following link July 2006 PBAC Outcomes- Positive Recommendations.
Although listed, further steps are to be undertaken which include pricing and approval by the Federal Minister of Health and Ageing.
More information on Exjade (deferasirox)
Hereditary Persistence of Fetal Haemoglobin (HPFH) is a term used to describe the genetically determined persistence of fetal haemoglobin production into adult life. The condition is inherited from one parent that has at least one gene for the HPHF. The individual that carries HPHF is not anaemic and there are no clinincal or haematological abnormalities associated with this condition.
When an individual carries both beta thalassaemia and HPFH the combination cannot cause anaemia. It is important that if this individual decides to have children they should have their partner tested for haemoglobin disorders.
If you would like further information on this condition please follow this link Carrying HPFH
acknowledges that people never know when they might find themselves in a caring role. That is the theme for this years Carers week.
Carers Week 15-21 October 2006
During October each year a National Awareness program is held across Australia. Acknowledging the 2.6 million Australian carers huge contribution to the communtiy is celebrated and rewarded with different activities held throughout Australia.
For further details about what is happening in your state or territory you may call the Commonwealth Carer Resource centre on 1800 242 636 or visit the Carers Australia website.
Come And Join the Thalassaemia Society of NSW
Vision Valley Get Away.
The Thalassaemia Society of NSW Inc. would like to invite you once again to join us in a fun weekend away. It’s a great opportunity for our patients, family and friends to meet and enjoy a fantastic weekend.
Cost: Free to Children 15 years and under and our NSW Thalassaemia, Sickle Cell and Blackfan Diamond Syndrome Patients. 16 yrs & up $100.00
When: 3rd to 5th November 2006
Where:7 Vision Valley Road Arcadia NSW 2159
Stringybark Lodge is where we will be staying
Includes: 2 Nights accommodation, Breakfast, Morning Tea, Lunch, Afternoon Tea, Dinner, Supper and Activities
RSVP: Rosa Dimitrakas 0400 116393 by 5th October 2006, booking form will be sent to you when you call to RSVP.
Limited space available. Our patients will get first priority so book early to avoid disappointment. Having been officially opened in August of 2001, Stringybark Lodge is the newest addition to the valley. It can accommodate 72 people.
There are two wings, 18 rooms (8 of which have en-suite bathrooms), two guest lounges, a large deck and an activities room. The activities room is complete with full sound system (including DVD player and large screen video projector).
This lodge also has both a kitchen and dining room and can be fully self-contained and a swimming pool.
The Thalassaemia Society of NSW Inc.
Thousands of Australians rely on dedicated blood donors each year. However, one in thirty people actually become a blood donor. Becoming a dedicated donor ensures that a life goes on living. One donation recieved saves three lives.
For an appointment call 13 14 95 or go to the Australian Red Cross Blood Service website to find out where you can donate in your state.
The BFA crew showing their stuff at the 11th International Congress of Human Genetics, Brisbane Australia. From left to right Isabella-QLD, Irene-SA, Giovanna-VIC and Josie-WA.
On Sunday, 6 August 2006 at the Brisbane Convention Centre, Queensland we attended a Thalassaemia Symposium Sponsored by Novartis Pharmaceuticals. It was a very worthwhile event which presented to an International audience of patient's, families, healthcare professional's, scientist's and geneticists. An overview of Thalassaemia was presented by well respected speakers form all over the world. Topics such as management of thalassaemia in different countries other than Australia which included third world countries. There was information on the latest oral iron chelator, Exjade and an update on research into gene therapy for thalassaemia. We had an opportunity to ask questions as an expert panel of doctors and scientist was scheduled after presentations. Further information will be posted as it comes to hand so stay posted.
