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Good afternoon every body, my name is Tarun and I am here to share with you, my experience of being a Thalassaemia patient. To start With I would like to give you a brief introduction about myself and the ups and downs I have gone through in my course of life.
When I was declared a Thalassaemia Major it was some thing that was unknown to my parents as they had never heard about this disease. They were shocked and wanted to know what does Thalassaemia Major mean? Then Dr. R K Marwaha from PGI, Chandigarh told them about Thalassaemia which is an inherited blood disease that causes anemia by restricting the production of hemoglobin.
My diagnosis started way back in the year 1983 when I was just 3 years old. Since then I have been taking blood transfusion.
At the initial stage, I had to take about 15-20 blood transfusion in a year which continued for the next 4-5 years. Suddenly the number increased to 25-30 blood transfusion in a year. Such an increased number of blood transfusions became an immense concern as regular blood transfusion can lead to the overload of iron in the body, which was again a cause of worry for my parents.
Now gradually things started changing as if my life took a major turn, my parents came to know about splenectomy which is the surgical removal of spleen. After splenectomy the number of blood transfusions decreased to around 17 transfusions in a year. Not only this, we also came to know about Desferal which was the only injection available at that time to prevent the overload of iron. Therefore, Dr R K Marwaha prescribed the use of Desferal injections as my serum ferritin level was quite high. I started taking Desferal injections regularly. Taking injections on a regular basis was never a problem; however, the matter of concern was that it was too expensive for a middle class family to afford; still My Parents arranged such costly injections for me.
I continued this routine for the next 5 years. Suddenly, something new & exciting was introductions for the Thalassaemia patients for preventions of the overload of iron. However, this time it was not a new costly injections but a capsule named Kelfer. Dr R K Marwaha prescribed me to take Kelfer. It was quite economical than Desferal & even it relived me from the pain of taking regular injections.
So those were happy days for me & my family as the treatment got economical & painless. That really sounds great!!! Yes, “economical & painless”, but do you know for how long it continued – it continued for just 3 Months and after 3 months it was only pain, the intolerable pain in my ankles. As a result Dr. R K Marwaha prescribed to discontinue Kelfer & switch back to Desferal. Therefore, again I had to continue with the same routine. It seemed like everything around me has become static, except age, as I was a grown up now
Grown up age is an age when we see life from our own perspective. This was the time when I started taking the treatment positively and become more regular with my injections, medicines & blood transfusions. This was also the time when I had a good growth in my height & also put on some weight.
Till this stage, I went trough all scenarios which are common amongst all Thalassaemia patients. However, there was some thing special that life had for me in its fold and it was still to happen.
One usual Saturday morning my deal was reading the local news paper, when he came across an article on a “Thalassaemia Girl who maintained a stable hemoglobin rate with the application of the wheat grass juice”. My dad showed that article to me and it was something very weird and wonderful. Fortunately, the article contained the girl’s home address. My mom & dad visited her place to talk to her parents about this unbelievable style of treatment. Her Parents told us that they were providing wheat grass juice to their daughter 3 times a day, since her childhood which stabilized her hemoglobin rate at 9 and she never required a blood transfusion.
That was something encouraging for me & my parents. My mom really got stimulated after meeting the girl & her family. She started providing me with fresh wheat grass juice on a regular basis.
In the initial period of wheat grass therapy, I had to go through a blood transfusion after a gap of 21 days; however, after 3 months the gap exceeded to 25 days, which in the later months exceeded to 30 days. And the success rate continued.
I would like to share the facts & figures of my success rate due to the wheat grass therapy.
I started taking wheat grass juice in 1999, in the first year I had taken 15 blood transfusions i.e. blood transfusion after a gap of 25 days.
In 2000, the 2nd year of wheat grass therapy. I had taken 15 blood transfusion again i.e. blood transfusion after a gap of 25 days. (That was same as in the year 1999)
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