By Dr Pranita Joshi Deshmukh | Research Coordinator at MAM's PARAS
"I can control my destiny, but not my fate. Destiny means there are opportunities to turn right or left, but fate is a one-way street. I believe we all have the choice as to whether we fulfil our destiny, but our fate is sealed."
This quote from Paulo Coelho reminds us about the painful destiny of Sickle Cell patients with a sealed fate of limited life.For sickle cell patient pain is not a choice anymore its their destiny.
Everyday they make choices which result in Do or Die literally !
In last 103 sickle cell camps over two decades; we have seen numerous sickle cell patients with painful conditions ranging from simple joint aches, pains and disability due to immense pain.Such Do or Die Choices start with conditions like Avascular Necrosis of Hip ( Femoral Head) of the bone which is an extremely painful and progressively disabling disorder. AVN if left untreated leads to hip arthritis, needing surgical intervention like surface replacement or total hip replacement, making a patient suffer more with such choices like "Do surgery or Die with pain". Tribal patient can not afford operations and treatments ranging over 6 lakh rupees.
Selecting an expensive surgery is always an impossible goal for tribals so accepting own's death becomes an easy choice.
We experienced this Do or Die scenario with a very dedicated and enthusiastic cheerful counsellor among our team who was a sickle cell patient herself.Arts graduate Anita came to our sickle cell centre in 2002 for treatment. With her own experience of sufferings she stared counselling to the sickle cell patients in bhill or tribal language. She was extremely nice in counselling. Her volunteering work with a caring smile made everything seem so easy.
One day she came to us and said that she had unbearable pain in pelvic region. She also requested us to refer her to good orthopaedic surgeon. The orthopaedic surgeon explained her about radiological findings. He also suggested to do operation of Avascular femoral head necrosis with expenditure about 6 lakhs.Her father being primary teacher was unable to spend this much amount.
Both Anita and her father came back to their village, Molgi, Dist Nandurbar, Maharashtra . She knew that this financial helplessness means accepting own untimely death.From this incidence she was so disappointed that she skipped her treatment and counselling services. After one year she join back with new hope of healing but her efforts went all in vain.
During the celebrations and preparations of Diwali In 2007 we got the most devastating news of her death. It was clearly due to lack of timely surgical care.
We would like to request you to join hands so that many such young bright and intelligent girls could be saved in future.
AVN needs intervention and this intervention needs your caring intentions. Please donate graciously to save future Anitas.
Let us pray that this Christmas season no child should make a choice between "Do or Die" .
Help us to spread the light of joy in lives of Sickle Cell Patients.
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By Dr Pranita Joshi Deshmukh | Research Coordinator at MAM's PARAS
By Dr Pranita Joshi Deshmukh | Research Coordinator
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