Support Sickle Cell Anemia Patient in Maharashtra

by Maharashtra Arogya Mandal
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Support Sickle Cell Anemia Patient in Maharashtra
Padmashree Dr Kate Felicitation on camp site
Padmashree Dr Kate Felicitation on camp site

Story of a Slow Walker who never walked back !! 

“Jadi tor daak sune keu naa aashe, tabe ekla chalo re…” means, ‘If nobody response and come forward to your call, then you proceed alone…move alone….march forward alone…’

 This famous, much sung, popular and celebrated patriotic song was penned and tuned by Vishwa-Kabi Rabindranath Tagore at the time of a historic juncture of India’s freedom movement, when in one side Mahatma Gandhi was preparing for his Dandi March and breaking the infamous “Salt-Law” enacted by the then British Rule and his Non-Cooperation Movement being spread all over the country 

Maharashtra Arogya Mandal is that lone walker who is pursuing the mission of Health, Education and Tribal Welfare since 1960 in spite of many hurdles , problems and challenges. 

Sickle Cell Anemia Project is one of the many socially reclaimed projects.

Every two months arranging the camp at two or three tribal locations covering more than two thousand screening is a hurculian task. Training and preparation of medical team starts weeks prior to camp and work goes on weeks after the team is back in Pune. Every camp tests the team work, passion and sincere efforts. MAM’s team is continuously up and active for this cause.

When organisation is committed automatically like minded people get associated and a big wave of transformation gets created. Sickle Cell Wave started with Dr Kate in 1990s with the vision for implementation and foundation support of Late Dr Dada Gujar founder member of Maharashtra Arogya Mandal.

Today … Its a proud moment for whole organisation when Dr Kate the founder member of the program gets a esteemed lifetime recognition of fourth highest civilian award PADMASHREE by Government of India.

Sickle Cell Project visionary volunteer Dr Sudam Kate has been awarded with the Padamshree for his outstanding contribution for the wellbeing of Sickle Cell Patients and their screening,treatment facilities. He is 87 years YOUNG PASSIONATE CHEERFUL SOUL committed to this cause who actively participates in every single camp in tribal areas till date.

Padma Awards - one of the highest civilian Awards of India, are conferred in three categories, namely, Padma Vibhushan, Padma Bhushan and Padma Shri. The Awards are given in various disciplines/ fields of activities, viz.- art, social work, public affairs,science and engineering, trade and industry, medicine, literature and education, sports, civil service, etc. ‘Padma Vibhushan’ is awarded for exceptional and distinguished service; ‘Padma Bhushan’ for distinguished service of high order and ‘Padma Shri’ for distinguished service in any field. The awards are announced on the occasion of Republic Day every year. Award function will be held in New Delhi where Hon’ble President of India will felicitate Dr Kate for his outstanding achievement and contribution. 

Dr Kate is such a noble soul walking on the paths of social reforms of Maharashtra Arogya Mandal that he didn't miss January camp amidst this felicitation and was politely grounded without claiming any credit to himself.. he dedicated this award to whole organisation, Late Dr Dada Gujar and Sickle Cell Team and started his jounrey for the next screening camp.

During Jan 27 to 30th camp at Dhadgaon, Ganor, Akulkheda, Dhule total 1135 old patients were supplied with medicine and counselling services. 498 new patients were diagnosed with 72 sickle cell patients and 146 carriers and rest as normal.

While this report is being written and submitted Maharashtra Arogya Mandal team and Dr Kate must be working in sickle cell camp untiringly more than 18 hours a day…travelling over 1500 kilometres and seeing more than 3000 patients.

No mater who comes along, no matter how difficult tribal terrain is , no matter how many patients will come…MAM will walk alone to the ultimate goal of service for humanity and YOUNG Cadets like Dr Kate will keep the flame of passion burring with their blood sweat and dedication.

Awards and Recognition like Padamshree is nothing but the reflection of MAM's work in social mirror.

I will leave you with this mesmerising poem …which showcases and can be synched with the ultimate story of struggle ... and victory of Maharashtra Arogya Mandal..a  slow walker who never walked back..

 until next time....

Dr Pranita Joshi Deshmukh

 

If nobody response to your call, then you move forward alone.

 

Proceed alone – Move alone – March forward alone !

 

If nobody talks to you, Oh Ill-fated !

 

And everyone turn their face back in fear –

 

Then you alone speak out without hesitation like a brave-heart.

 

If everyone go back, Oh Ill-fated !

 

And no one turn back to accompany you –

 

Then you walk alone over the thorny road

 

Even though your feet bleeds.

 

If nobody show you the light, Oh Ill-fated !

 

And in thunder storm in the dark of night

 

Everyone shut their door upon you -

 

Even then you proceed alone

 

By burning the ribs of your chest in the fire of lightning !

 

 

https://padmaawards.gov.in/SelectionGuidelines.asp
https://padmaawards.gov.in/SelectionGuidelines.asp

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Green is the colour of Hope and Peace !
Green is the colour of Hope and Peace !

Global Givers’ Warmth and Care Keeps us Going!! 

 

Giving is Generous Caring !!

Giving is personification of empathy and act for wellbeing of others. Our donors, doctors, technical team and volunteers are all givers. In every camp we held.. in every tablet of medicine we dispense.. and in every act of counselling, screening or diagnosis we notice ‘giving’ at the most supreme level of care,love and support to deal with Sickle Cell Anaemia.

Volunteers are worth their weight in gold. They share their time and talents without any compensation, so it's crucial to acknowledge their contributions and let them know they are valued.

The compassion they show to the people we serve is an inspiration for us all. Their treatment to everyone is always with respect and kindness, no matter what the situation is. We all know how stressful it can be for the people who find themselves in need of the services we provide, and their words and actions go a long way toward helping sufferers keep their dignity. I just want you all our doctors, administrative staff and volunteers to know that your work hasn't gone unnoticed.

For it is in giving that we receive. 

We are marching ahead towards next year with the enthusiasm of our volunteers and doctors.Donors’s generosity is mother of hope and future for our patients. It also creates love for life in the minds of sufferers.

Thank you for all for all that you do. It keeps us going.

We have conducted many camps in September and October and following facts and numbers will give you all an insight that hundreds of new patients are getting identified almost in every camp. The substantial number of old patients in all camps are nothing but certification of trust they have on our medicines and care.

On the other hand old patients are becoming torch bearers in creating more awareness among tribals for maximum screening sped family so as to diagnose the disease and start treatment.

The percentage of sufferers in September shows alarming percentage of sufferers and carriers for Sickle Cell Anaemia.

This is the beginning of cold in India and with Diwali and other festivities round the corner we want your support to provide warm cloths, medicines and healthcare facilities to patients in need.

Cold weather triggers sickling process and all the symptoms of the disease get worsened.Children are largely affected by this and they get bed bound and cant play much.This Diwali and Christmas let us bring joy and happiness on these little faces and make our giving special once again.

‘We are constituted so that simple acts of kindness, such as giving to charity or expressing gratitude, have a positive effect on our long-term moods. The key to the happy life, it seems, is the good life: a life with sustained relationships, challenging work, and connections to community’ as rightly quoted by Paul Bloom will inspire us to give back to community we belong.

Keeping you amazed with some greenery shots around the most deserted state of health.

Until next time !!

 

Dr Pranita Joshi Deshmukh

 

 

 

 

 

 

 

 

 

 

 

 

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Smiles and Sufferer Siblings
Smiles and Sufferer Siblings

The camp in tribal area is always challenging and testing ones patience..

But this camp was special as some of the beneficiaries were wearing their best dress to inspire us...their million dollar smile...

Sharing some of the glimpses from the field visit..

In the tiring journey from Pune to distribution of medicines ..when team is struggling to meet the demands of crowd..some faces catch our attention..these small shining smiling faces not only refuel our energies back on the field but also nurture the smallest hope we have in this difficult terrain..

Our beneficiaries are from toddlers to elderly ...every time they share a memory of how this camp helped them to deal with the disease joyous tears roll down their cheeks ..but these smiles are always there..

Detailed visit report will be posted soon..

Meanwhile just enjoy sunshine..smile and joy...

Smiling Son in the Sunshine..
Smiling Son in the Sunshine..

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Clinical Examination of patients
Clinical Examination of patients

"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. 

 

 

 

 

 

 

 

 

 

 

 

Mass screening and examination of patients in camp
Mass screening and examination of patients in camp

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Blood Tests
Blood Tests

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 !

Individual Counselling session
Individual Counselling session
Group Counselling and Q&A session
Group Counselling and Q&A session

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Organization Information

Maharashtra Arogya Mandal

Location: Pune, Maharashtra - India
Website:
Anil Gujar
Project Leader:
Anil Gujar
Pune, Maharashtra India

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