BE AWARE FROM THE RARE

“It’s not just the blessings but even curse that come in disguise”, I heard an old woman lamenting on the streets of Palampur village. When I approached her to find out the matter, I found her saying, “I lost my young daughter recently who was suffering from some rare blood disease”. Little did the woman know about the cause of her young lady’s death. So after all this when I looked around, I found myself surrounded by a crowd of curious faces, enjoying the scene but doing nothing to help the old mother.

When I questioned the people about the disease, they started making alien faces. I decided to look into the medical files of the dead young daughter to stop the clouds of curiosity swirling in my head and to explain the reason of death of a daughter to her mother.

So, I found that she was suffering from MYELODISPLASTIC SYNDROME, known as MDS or mylodisplasia which is a blood related medical condition related to ineffective production of blood cells . Patients suffering from MDS, suffer from anaemia and require blood transfusions. To know more about it, I turned to the internet. There I found that MDS is listed as a “rare disease” by the Office Of Rare Disease [ORD] of of the National Institutes of Health [NIH]. Orphanet, a consortium European partners currently defines a condition ‘rare’ when it affects 1 person per 2000. I told her that MDS is a type of cancer where the bone marrow does not make enough healthy red blood cells, white blood cells and platelets and there are abnormal blast cells in the blood or in the bone marrow. In an MDS patient, the immature blood cells die either in the blood or in the bone marrow. So with a few blood cells the body is prone to anemia, infections and easy bleeding.

After telling her all this, I saw the empty eyes of the old woman asking me the cause of such a disease. I further told her that use of certain chemotherapy drugs for cancer plays a role in later development of MDS cases. Some inherited conditions like Fanconi Anaemia where bone marrow fails to make blood cells, Shwachman – Diamond Syndrome which keeps bone marrow from making white blood cells and exposure to certain industrial chemicals are the causes of MDS. Smoking also increases the risk of MDS. Listening to all this, the mother replied that her daughter never smoked but it was her grandmother who happened to be suffering from cancer in her times. And so, inheritance was the cause of MDS in her daughter. The old lady further told me that her daughter suffered from anaemia, unusual bleeding, fatigue, bruises and red marks under her skin which all were the symptoms of this rare disease. She further told that samples of blood, bone marrow was taken for the diagnosis, physical checkup was also done but it was too late. With tears in her eyes, I do not know why the woman asked that how could her daughter have been treated, if the diagnosis was done timely.

Looking over the net, I told her that chemotherapy drugs which is even used to treat leukaemia, growth factors encouraging bone marrow, blood transfusion, antibiotics and on top of it stem cells transplant – could have been the only treatment capable of curing MSD through which new stem cell start producing new blood cells in the body .

Listening to all this, the woman suddenly stood up with vigour and vowed to start a campaign to raise awareness for Myelodisplastic Syndrome, blood donation and bone marrow donation so that no other mother would ever lose her daughter because of this. Thus, awareness gave a new motive to a hopeless and deeply crushed old woman.

We must also be aware from not just prevalent diseases but also from the rare ones because PREVENTION IS BETTER THAN CURE.

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