Sankalpa Voluntary Organisation

Regd.231/10

SANKALPA VOLUNTARY ORGANISATION

TO REACH THE UN-REACHED PEOPLE

H.NO.3-2-70/A. INDIRANAGAR COLONY, KHAMMAM – 507002

www.sankalpavo.blogspot.in, MOBILE :9959946589, 9849892547. 9959593639

THALASSEMIA MAJOR IS A LIFE THREATENING GENETIC BLOOD DISORDER.

THALASSEMIA IS VIRTUALLY INCURABLE, BUT 100 PER CENT PREVENTABLE.

LACK OF AWARENESS ABOUT THE DISORDER IS THE REASON FOR THALASSEMIC CHILDREN BEING BORN.

Survives only with frequent Blood transfusion every 15-20 days for life.

Knows there is virtually no cure for the disorder ( the only cure is a Bone Marrow Transplant from matching sibling and costing over Rs.15 Lakhs, where success rates less than 70%.

Proper Management costs over Rs.1 lakh per year.

The older patients get needle pricked over 250 times every year

For them the Iron Removal medicines (Chelator called DESFERAL) has to be injected over periods of 6-8 hours per day, 4-5 days a week.

Continuously exposed to needle related deceases like HIV/Hepatitis etc..

Suffers from disorder of the Heart, Liver, Endocrine system, Osteoporosis etc.

Forget costs, even after all the expenses there is no surety how long they

will survive they live with this fear. Today's average age of survival is approx 25 years.

A Thalassemia Major Child is born ONLY if BOTH parents themselves have a genetic problem, called the Thalassemia Minor or trait. They are unaware because they are normally healthy, and continue to enjoy good health. If either of them is not a 'carrier' their child can NEVER be a Thalassemia Major. (The person who are having Thalassemia Minor or Trait will be call Thalassemia Carrier)

An estimated 40 million Indians (including your) are unaware of that they could be ‘carriers’ Thalassemia to their future children.

There are only two ways to find out:

By doing a Blood test (just one in your life time)

Or When your child is born a Thalassemia Major.

Those detected to be 'carriers' (having the Thalassemia Minor Trait) have no need to worry. They are healthy and will remain so for the rest of their lives. Thalassemia Minor is not a disease but Thalassemia Major is life threatening disorder

THALASSEMIA PREVENTION IS THEREFORE A NECESSITY NOT A CHOICE

AWARENESS ON THE HAZARDS OF THALASSEMIA AND HOW IT CAN BE PREVENTED IS THE ONLY SOLUTION.

ESTIMATED COST OF ONE CHILD PER MONTH:

Filter Bag ( Two per month ) : 650 – 750 Rs. 1,500-00

Iron Chelation

Asunra (1 to 2 Tab per day) Each Tablet Rs.150/-: Rs. 4,050-00

Or

Kelfar one tablet per day : Rs. 2,000-00

Or

Deferasirox Tab for oral suspensionDefrijet Rs. 3,000-00

Folvite,[[http:B.complex|B.complex]], Multivitamis etc. : Rs. 800-00

Lab around one month : Rs. 1,000-00

Approximately Rs.5,300 to 8,000/-

Sankalpa Voluntary Organisation was established in the year 2010. We are giving Awareness on THALASSEMIA and HIV/AIDS deceases by giving counselling and educated people to avoid Blood related marriages for eradication of Genetic deceases including THALASSEMIA. Our first priority is to extend all kind of help to the patients suffering with THALASSEMIA major and HIV/AIDS. Since the organisation established we have conducted so may awareness camps in Khammam district and provided helps to the needy. Our organisation is intended to extend selfless service to the poeople suffering with serious deceases. The Motto of our Voluntary Organisation is To reach the un reached people. We are conducting Blood Donation camps for Thalassemia children. In our Khammam district 120 to 150 children are suffering with Thalassemia. Many people are not know what is Thalassemia, how to prevent it. This decease is Genetic Blood desorder. Thalassemia is not curable, but it is preventable. Our organisation is mainly focussed on Thalassemia decease.