Support Sickle Cell Anemia Patient in Maharashtra

"We must accept finite disappointment, but never lose infinite hope".

Maharashtra Arogya Mandal is working in the field of Sickle Cell Prevention, diagnosis and treatment for almost two decades now. This journey is a constant effort to keep our self-motivated souls in the most difficult and testing circumstances. 

Sometimes you tend to feel that all the efforts, time and inputs put together are futile as there is no ray of hope for treating Sickle Cell Anemia. This condition is a continuous struggle for their parents and family members as well as for the doctors who treat them with all sorts of symptomatic and palliative care.Being a doctor myself and knowing medical fields’ limitation is like walking on a rope which hangs joining two challenging mountains. Every follow up from Sickle cell patient is a new challenge for the doctor. When patients comes from a tribal area with limited financial and living resources; then a doctor’s advice on a healthy diet and multivitamins seems like a distant dream in their everyday's  bread and butter war.

Looking back at the disease path we sometimes feel we are just managing this disease like an angry elephant with a tiny rope of hope and patience. We as well as the patients’ family live under the clouds of uncertainty and disappointments.It is said that “The only thing that makes life possible is permanent, intolerable uncertainty; not knowing what comes next.” This was proved once again recently during the preparations for screening and treatment camp.

We conducted the camp from 24 to 26 March at Dhadgaon district and Akulkheda town where in extreme heat we treated 885 old patients and screened 144 new patients. More than 1029 patients got benefited in Dhadgaon camp with diagnosis, medicines and counselling. In Akulkheda camp more than 123 patients were treated and 49 new patients were screened. Both the camps in total served more than 1200 patients. Our travel and stay for a week during the summer heat with limited luxuries of modern life was testing our team’s endurance specially after this tiring camp in March. Immediately in April we started our preparations for May camp. Due to  heat everyone was exhausted and today we were again getting ready with packing medicines for hundreds of patients when we came across a ray of hope. 

On that sunny hot and busy afternoon; we met a 15 year old enthusiasm filled happy soul just diagnosed with Sickle Cell in our hospital.  His father got him for treating his long term illness with fever, joint pain and low hemoglobin. On examination he was having splenomegaly (abnormal enlargement of spleen); joint aches and fever, which later confirmed with blood tests that he is sufferer of dreadful sickle disease. His pain and disappointment at this young age was more agonizing than our worries and shallow sorrows. Yet he was happy to talk about it and also offered his help in our work for next camp which was unimaginable gesture.

On detail case assessment we came to know that this is a family of six with parents and four children previously living in small town of Telangana state of south India. They recently shifted to Pune, Maharashtra due to limited medical facilities for children and no job opportunities for his father. We counselled the family, tested all other children’s blood for sickle cell status and gave medicines to youngest sufferer. He was the only sufferer rest of the kids were normal still he was non complaining and calm as if he has accepted the fate and shook hands with pain with smile.

His smile not only sparked new hope and energy in our team but also made us believe that whatever little we are doing is creating a change. We can avoid pain to some extent give them a normal childhood and can ensure that next generation will be more aware and prepared for this disease.The impact of his visit was visible in the May camps from 26 to 29 May 2018 at two outreach centers in Dhadgaon and Akulkheda. This camp was successfully conducted in most difficult conditions with most determined minds for more than 1364 patients in the sunshine of hope, happiness and humanity. We could see his motivating smile on every child's face which was bringing us back to work.

Thank you all who always stood with us as the back bone and encouraged us to keep going. We hope your support continues and we can work towards helping many more sufferers. 

Links:

• Maharashtra Arogya Mandal's website link

American scientist Ryan Bethencournt once quoted that “I imagine a day, some time in the not too distant future when children and teenagers will be able to create their own genetically engineered machines, cure the diseases of the old and find new ways to build and extend the capabilities of humanity, moving from programming software to programming the physical world, through biology.”

With limited possibilities to cure or treat Sickle Cell Anaemia we believe that one day his vision will be a reality. However that stage of genetically engineered machines still neither won’t  be accessible nor affordable to the tribal population of India.

We need to find the solution in a holistic and universally adoptable way using traditional science of Ayurveda. But we are still going ahead with inspiration from our patients who are struggling on many fronts and emerging out as a true fighter with never to give up attitude.

From January to March, Maharashtra Arogya Mandal conducted many activities in awareness, screening and treatment of sickle cell anaemia with traditional Ayurveda based tools in tribal areas of Maharashtra.

In January total total six days screening camps were conducted in Dhule, Dhadgaon, Akulkheda and Shelubazar.

Total 1707 patients were treated and diagnosed where 1128 were from old follow ups and 579 were newly diagnosed with 62 as sufferers.

On 25 and 26th March 2018 Total Old Patients 880 with New Patients 144 were screened and diagnosed withAA 34 ; AS 75 ; SS 35 patterns in Dhadgaon camp.

We also participated in conferences and conclaves to discuss about awareness drives in tribal belt specially for sickle cell anaemia.

We are aware about our limitations to serve many others who are facing this disease alone. We need continuous flowing funds to take care of recurring  expenses as well as to manufacture medicines for more than 1500 patients for two months in every bimonthly camp. 

Safe food meant strong troops and power to Napoleon, who noted aptly that “an army travels on its stomach.” His troops suffered more from hunger and scurvy than combat. In 1795, to be sure his men had safe rations, the French government under Napoleon offered a 12,000-franc prize to anyone who could come up with a food preservation method. A fight needs fuel with right machinery, mechanics and tools to combat. Sickle Cell disease is a continuos war and Fighter can not fight empty stomach..we need to provide them basic facilities and provisions to tackle this deadly disease.

Global giving platform has given us courage and hope that we have the generous support of well-wishers across the globe and we can do our bit to help poor and needy patients.

Donors appreciation is keeping us going for more than three decades now in the area of sickle cell anaemia screening and management.

Until next time ! 

Keep Walking ! Keep fighting !

Links:

• Maharashtra Arogya Mandal