In his own words.
Friday, September 1, 1995
My story
Introduction
I am the only son of my parents.
I was born with a genetic blood disorder known as Thalassaemia Major (TM). A person suffering from TM does not make enough haemoglobin or Red Blood Corpuscles (RBC’s). I have this because both my parents have half a defective gene for Thalassaemia, i.e. they are both Thalassaemia Minor. That does not mean they are sick or have an illness, except that they are slightly anaemic.
I was diagnosed as TM when I was 8 months old. In those days, no one knew anything about Thalassaemia. Even doctors knew very little, therefore it was very tough on my parents to face the facts of my condition and learn to cope with it. As it is with all Indians, my parents accepted it as their fate and perhaps it is a suffering caused by their own karma or a curse carried on from a previous life.
Treatment
My early childhood was just like that of every other child. Only my parents were somewhat overprotective. I grew up with TM without really knowing that I was seriously sick. As treatment for my illness, I was being given a blood transfusion once every six weeks.
Over the years, because I have grown and my body volume has increased, the transfusion regimen has reached a weekly frequency. This frequency is necessary because in our country we encounter many problems, such as non-availability of donor blood, quality and haemoglobin level of the blood, the restricted hours of the transfusion centre, etc. In the Government and NGO facilities, even a weekly frequency is often stretched to 12-13 days due to shortage of blood and other administrative hassles. I have no choice but to put up with all this because the expenses involved are affordable at about Rs. 150/- (US$ 3.5) per transfusion.
If I were to avail of the services offered by private blood banks or nursing homes, I would not only have to bring my own donor for blood, but also spend about Rs. 1500/- (US$ 35) per transfusion. This appears to be quite cheap compared to the expenses for similar services in the UK or USA. However, one must not lose sight of the fact that my father earns about Rs. 8000/- (US$ 225per month). If I receive four transfusions a month, the expenses would take away a large part of my dad’s earnings. My family can be included in the upper middle class income group. Consider what would be the plight of people belonging to middle and lower income groups.
Respectively taking all this blood transfusions leads to another problem i.e. from overload.
Due to biological reasons excess iron starts accumulating in the body and interferes with the functioning of the various organs in the body. To remove this excess iron, I started taking Desferal as early as 1977. Perhaps I was the first Thalassaemia in India to do so. Of course, the drug was not available locally and had to be imported. My father’s cousins and friends, whenever they travelled to London or Rome, used to bring a couple of boxes of Desferal with them. The first time I took one vial of Deferral in 5ml of distilled water is something I remember very well. Dr. Asha veer, a Haematologist, injected the whole syringe in one go into my bum. I could not sit straight for two days. She was a good doctor. Unfortunately, she expired due to cancer some years later. She was the type of doctor who was dedicated to her work and hence I think I should her in this write up.
After some years, we came to know that for Desferal to be effective it has to be administered subcutaneously and over 8-10 hours of slow infusion with the help of an electronic pump as small as a pencil box. My parents purchased this pump in 1982 for a princely sum of Rs. 8000/- (US$225) at a time when my dad was earning approximately Rs. 1500/- (US$35) per month. In 1982, Desferal became locally available. If I were to take the doctor’s recommended dosage it would cost me Rs. 20000/- (US$ 520) per month. After taking Desferal for seven years my serum ferritin level reached a figure of 8000, a level which ultimately took a toll on my heart and liver. Then in 1989 a wonderful thing happened which was the end of Desferal for me.
A new oral iron chelating drug called Deferiprone (Kelfer) came on the scene. I started with one capsule of 500mg per day, reaching up to a peak of 12 capsules per day, the highest dose ever given to anyone on the trial. After me, two others got a similar dose later. Regardless of the side effects of the new drug, about which I have heard, the pill definitely works for me. Today my dosage is 7 capsules per day and my serum ferritin level is 1400, the lowest ever it has been in my entire life and the biggest benefit of all is the freedom from daily injections.
After the trials were over, the pill was made commercially available in 1995. Until then, I was getting the pill free of cost, but now I have to buy it. The cost is quite cheap compared to Desferal. I spend about Rs. 3500 (US$ 100) per month. According to the procedure prescribed by the FDA, I have to get my CBC done every month and a serum ferritin every six months. This way my doctor keeps a tab on signs of any side effects. I have not touched Desferal since about 8 years now and my iron overload has only improved dramatically for the better, thanks to Deferiprone.
Deferiprone in India is available through CIPLA a pharmaceutical company who carried on the tests for long years and then introduced Kelfer in the market. I hope all Thalassemic’s out there read this and be assured that we have reached a stage where the treatment is not all that cumbersome or expensive.
With the quality of my life improving I have started to look up to other aspects. I keep in touch with latest developments in and for Thalassemia through International meets and participation in local parent-patient organisation
I thank you kindly for taking your precious time out for reading this.
Update Early 2000
Things are really looking up now, I am presently employed in the IT industry, coming out of recession, have just started saving some money finally. This is really a short update, I know I will add another paragraph to this page after all the above was written in 1998, its 2000 now. Wow I made it to the minllenium.
Update May 2002
30 years old, 8 years on desferal and 12 years on Kelfer wow!!
I need to really keep a diary for everyday I live, for sure its gonna make juicy reading. I thought millenium was big now I am targeting 2005 WOW thats like the future. I dont know whats in store but its the first time I am looking to the future instead of sulking on whats past. BTW how do you like my domain!
Posted by ThalGuy at 11:25 PM